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The Value+ HandbookFor Project Co-ordinators, Leaders And PromotersOn Meaningful Patient Involvement

This handbook has been published with the support of the European Commission, Directorate General for Healthand Consumers under the Public Health Programme 2008-2013. The information contained in this publication doesnot necessarily reflect the position or opinion of the European Commission.

Value+Promoting Patients’ Involvementin EU supported health-related Projects

Project Leader: the European Patient’s Forum

Project associate partners: Confederation Health Protection (KZZ), Bulgaria; empirica, Germany; European Instituteof Women’s Health (EIWH); European Men’s Health Forum (EMHF); European Network of (Ex-) Users andSurvivors of Psychiatry (ENUSP); Health Policy Center of Lithuania (SPC), Lithuania; Spanish Patients’ Forum(FEP), Spain.

Project collaborating partners: Agrenska Foundation, Sweden; European Federation of Allergy and AirwayDiseases Patients Associations (EFA); European Multiple Sclerosis Platform (EMSP); Mental Health Europe (MHE);Retina International/Retina Europe.

Details about the Value+ project are to be found at: www.eu-patient.eu/projects/valueplus/index.php

The Value+ Handbook was compiled on the basis of the findings of the Value+ project.

It was written by Diane Whitehouse, consultant member of the Value+ team and Liuska Sanna, Programme Officerof EPF, in close collabor-ation with members of the Value+ Steering Group and European Patients’ Forum executives.They are listed in alphabetic order:

Jörg Artmann, empirica; Nicola Bedlington, EPF; Maria Dimitrova, KZZ; Joana Gabriele, FEP; Peggy Maguire,EIWH; Erick Savoye, EMHF; Efstatia Megas, EPF; Rainald von Gyzicki, Retina Europe; Elizabeth Winder, ENUSP.

The Value+ team acknowledges the valuable contribution of all those who offered comments and feedback onthe handbook. We would like to thank:

Prof. Heiner Ellgring, University of Wuerzburg, Germany; Jean Georges, Alzheimer-Europe; Tony Lam, NetUnion,Switzerland; Marc Nyssen, Vrije Universiteit Brussel, Belgium; Dr. Diana Rose, King’s College, United Kingdom;Maryze Schoneveld van der Linde, European Neuro-muscular Centre; Sophie Staniszewska, Warwick University,United Kingdom; Prof. Thomas Wagner, University of Frankfurt, Germany.

European Patients’ ForumRue Belliard 651040 BrusselsBELGIUMPhone: + 32 2 280 23 34Fax: + 32 2 231 14 47Email: [email protected]: www.eu-patient.eu

Foreword

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Dear Reader,

It is my pleasure to introduce you to the Value+ Handbook, one of a series of core resources that were producedas a result of the Value+ project.

Value+ grew out of a vision of the European Patients’ Forum and our project partners on the need to exchangeinformation on good practice relating to meaningful involvement of patients and patient organisations in Europeanhealth projects supported by the European Commission.

The outcomes of such projects should shape health policy and decision-making, influence the direction in whichresearch is heading and feed into the development of health technologies, treatments and services. These projectstouch on so many aspects of patients’ lives and experiences, that it is crucial for patients and patient organisationsto be part of them.

The Value+ project has demonstrated unequivocally that meaningful involvement of patients enhances the resultsof health projects, thus enabling patients to contribute more effectively to policy towards patient-centred, equitablehealthcare throughout the European Union. In conjunction with the resources made available through Value+,we have developed policy recommendations to reaffirm political commitment to meaningful patient involvementalso at policy level.

The handbook was written to support project co-ordinators and project leaders and promoters of European projectsin maximising the benefits of involving patients and patient organisations in European health-related projects.

We are confident that this handbook will help you to identify and approach patients and patient organisations,work effectively with them on a project, and address the opportunities and challenges relating to patient involvementin projects. It is worth reading alongside the Value+ Toolkit for patients and patient organisations.

Like the other resources produced by Value+, this handbook is the result of the contribution of many projectco-ordinators, patient representatives and patients who enriched it with their insights and knowledge. We are gratefulto you all for your engagement, for sharing your views and experiences and making this handbook possible.

We would very much welcome your suggestions and feedback on how to improve the Value+ Handbook. We wouldalso like to enhance the document with more illustrations of projects, and project experiences. We would be verypleased to hear about your project’s patient involvement activities. Kindly send Value+ any details to [email protected].

Warmest regards,

Anders OlausonEPF President

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Table of Contents

1 INTRODUCTION 7

1.1 Aim and concept of the Value+ project 81.2 What did the Value+ project do? 91.3 Achievements of the Value+ project 10

2 ALL ABOUT THE VALUE+ HANDBOOK 11

2.1 Target readers 122.2 Overview of the handbook 12

2.2.1 The handbook annexes 132.3 Relationship between the Value+ Handbook and the Value+ Toolkit 13

3 WHY IS PATIENT INVOLVEMENT IN HEALTH-RELATED PROJECTS IMPORTANT? 15

3.1 What the literature says about patient involvement 163.2 Benefits of involving patients and patient organisations in a project 173.3 The political “why?” of patient involvement 18

4 WHAT IS MEANINGFUL PATIENT INVOLVEMENT? 21

4.1 What patient involvement and meaningful patient involvement meant to Value+ 224.1.1 Definitions of meaningful patient involvement 22

4.2 Value+ Model of Meaningful Patient Involvement in projects 234.3 Equity in patient involvement in health-related projects 25

4.3.1 Gender and patient involvement in health-related projects 254.3.2 What is gender and why it is important in health-related projects? 254.3.3 Benefits of and tips for focusing on gender in health-related projects 26

5 CO-ORDINATING PROJECTS TO INVOLVE PATIENTS MEANINGFULLY 29

5.1 Background to health-related projects and getting patients and patient organisations involved 305.2 Different types of project 31

5.2.1 Selecting patient organisations and patients for the particular project 315.3 Project stages and patient involvement 32

5.3.1 Finding a proposal idea 335.3.2 Proposal drafting and submission 345.3.3 The evaluation process 355.3.4 The negotiation meeting 365.3.5 The project start or ‘launch’ 365.3.6 Day-to-day running of the project 375.3.7 Dissemination of project news, developments, and outcomes 375.3.8 Project reviews 385.3.9 The end of the project 39

Table of Contents

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6 WORKING WITH PATIENTS AND PATIENT ORGANISATIONS 41

6.1 Background information on patients and patient organisations 426.1.1 Choosing patients and patient organisations 43

6.2 Working with patients and patient organisations in a project 446.2.1 What supports patients to be involved in projects and what can incentivise them? 446.2.2 Ethical issues that are important for patients 456.2.3 Patients’ social and medical contexts 46

6.3 The sustainability of patient involvement throughout a project 466.3.1 Financing and resourcing patient organisations 47

ANNEXES 49

Annex 1: Reading materials 50Annex 2: Examples of good practice 52Annex 3: Where to find out more about patient organisations, patients’ conditions, and patients' rights 55Annex 4: Value+ tools 56

GLOSSARY OF TERMS 61

ABOUT THE EUROPEAN PATIENTS’ FORUM 66

Introduction

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The Value+ project Promoting Patients’ Involvementin EU Supported Health-Related Projects, led by theEuropean Patients’ Forum (EPF), decided to investigatethe challenge of how patients and patient organisationscan be meaningfully involved in European Commission(EC) co-funded projects on health issues.

Value+ wanted to know what has been happeningin relation to patient involvement over the past ten yearsin European health-related projects. It was also keen toshape understanding on what could happen in futureprojects by, with, and for patients.

This handbook is one of several core documents thatValue+ has produced. They include a literature review onpatient involvement, policy recommendations targetedto the European Union Institutions and Member States,and a toolkit for patients and patient organisations.There is a great deal of synergy and complementarityamong all these documents; they can be read togetheras part of a package, or individually for specific needs.

The handbook is written for project co-ordinators,project leaders and project promoters of EC co-fundedprojects who may or may not themselves be membersof patient organisations. We assume, that many readerswill not be either members of patient organisations orpatients; therefore they may not be familiar with aspectsof patient involvement that the handbook addresses.

Within the Value+ project, we have used the term‘patient representative’ to refer to anyone froma patient organisation which represents patients,whether they were a paid worker or volunteer, with orwithout personal of family experience of the conditionconnected with their organisation. Of course manypatient representatives are also patients. We have usedthe term ‘patient’ only for those who have been involveddirectly in a project as patients or as family members ofpatients, without being part of a patient organisation.

The intention of this document, as with all Value+ work,is to enhance the opportunities, quality, and results ofinvolving patients and patient organisations in Europeanhealth-related projects. This aim presents substantialpositive challenges for project co-ordinators, projectleaders and project promoters whether or not they havealready experience of working with patients or theirrepresentatives.

In this sense, the handbook offers advice, evidence,examples, and signposting to further information thatcan be useful to its readers whatever extent ofexperience in patient involvement they have.

1.1 AIM AND CONCEPT OF THE VALUE+ PROJECT

Value+ aimed to promote patient involvement inEC co-funded projects by exchanging information,experiences and good practices among keystakeholders in relation to meaningful involvementof patients and patient organisations.

Value+ viewed meaningful patient involvement as ameans to enhance the results of projects, and tocontribute to the development of patient-centred,equitable healthcare policy throughout the EuropeanUnion (EU).

On this basis, the project wanted to achieve:

• A comprehensive evidence-based overview ofcurrent practice and trends regarding patientinvolvement in EU health projects

• An extensive analysis and reflection regarding criticalsuccess factors, challenges and hurdles regardingpatient involvement

• The identification of good practices in patientinvolvement to inspire and motivate key playersat policy, programme and project levels

• The development of very specific targetedresources.

The Value+ Handbook aims to enhance the opportunities,quality, and results of involving patients in European

health-related projects.

A tip for reading the handbook: all the wordswhich are underlined are described in detail in theglossary of terms at the end of the handbook. It iseasy and worthwhile to turn to the glos-sary for abrief definition of any complex term. We hope wehave captured all the terms that the readers mightneed to know about.

Value+ created a snapshot of patientinvolvement in terms of European projects.

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1.2 WHAT DID THE VALUE+ PROJECT DO?

The Value+ team decided to use qualitative studymethods to explore the field of patient involvementbecause this topic had not been investigated beforein European health-related projects. The focus was onprojects that are connected with chronic diseases orrecurrent conditions.

We took a field research or case study approach.Even when undertaking the questionnaire survey,we favoured a qualitative approach that used largelyopen-ended questions.

This kind of exploratory approach is suitedto relatively early stages of study in particular fields.It is also appropriate in terms of exploring a moreprocess-related subject or one which simply involvespeople. Value+ covered a lot of new ground. No previousproject or organisation had explored precisely what washappening by way of patient involvement in Europeanco-funded health projects. There were also no specificEU guidelines to support patient involvement in this typeof projects at the time of writing.

In terms of methodology, we initially investigated whathad been happening in terms of patient involvement inthe available literature that had received a peer review.We also drew on other published literature frominternational organisations such as the EC andthe World Health Organization (WHO), and books,pamphlets and literature published by various patientorganisations, health authorities, and non-governmentalorganisations.

Based on the findings of this literature review,we undertook a questionnaire survey of all the projectsthat we could identify over a ten-year period that couldhave involved patients. The projects were distributedthroughout many different subject areas supportedby the EC; they included public health, employment,information and communication technologies,education and research. From this large sample,we selected a number of projects illustrating howdiverse good practice in patient involvement can be.

Value+ also worked with a number of current projectswith the aim to find out what might support projects toinvolve patients well, and to encourage them to includemore patient involvement in their work.

A key aim and feature of Value+ was to identifythe difference between patient involvement and whatit considered to be meaningful patient involvement.As a result, we intended to develop a framework ormodel of patient involvement that could be used asa reference in projects.

For this purpose, we tested out the meaning andimportance of patient involvement in discussionwith patients, patient representatives, and projectco-ordinators from non-patient organisations in focusgroups and workshops. The workshops also promotedpatient involvement by organising capacity-buildingseminars focused around building advocacy skills ofpatients and patient representatives. Value+ ended witha large, international conference that attracted some100 persons and was web streamed to enable manymore stakeholders to be involved both in ‘real time’and after the event.

Value+ aimed to be an example of good practice in itsown right in terms of patient involvement. With this inmind, it made sure that the majority of project partnerswere patient organisations and patients. Moreover, itarranged for its own work to be evaluated1 continuouslyby an independent evaluator. This evaluator followedthe project throughout its duration, attended some ofthe project’s meetings, and sent evaluation questionnairesto the project team members (and others). The focusof this evaluation was on the project’s process andoutcomes.

1 The Value+ project used the notion of ‘evaluate’ in a situation where the EC often uses the term ‘review’ instead. In Value+ terms, evaluation needs

to be understood as an ongoing, continuous process of commentary and enhancement of processes that took place throughout the duration of

the project.

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Introduction

1.3 ACHIEVEMENTS OF THE VALUE+ PROJECT

As a result of the work described, Value+ created asnapshot of what patient involvement is in terms ofEuropean projects and made a set of proposals withregard to what patient involvement could become.It expanded these proposals to relate to other, wider,forms of patient involvement e.g., in decision-makingrelated to healthcare systems and services, and topatient involvement in policy development.

The project outcomes have taken many forms.In addition to this handbook, we produced:

• A toolkit for patients and patient organisationsto support them in getting meaningfully involvedin projects

• A set of policy recommendations calling on the EUInstitutions and Member States to reinforce theircommitment to patient involvement

• A database of European health-related projectswith patient involvement

• Examples of good practice• A literature review• A directory or European and national patient

organisations• An overview of patients’ rights in the Member States.

All of these deliverables are accessible on the Value+website.

How to find out more about Value+

Details about the Value+ project can be foundin two places. Look on the project website orsubmit a request to the project co-ordinator,the European Patients’ Forum. See:

www.eu-patient.eu/projects/valueplus/index.php/

www.eu-patient.eu/about_us/contact_us.htm

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All About the Value+Handbook

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This chapter examines who the potential readers are,what this handbook is, what it contains, and what thelinks with the Value+ Toolkit are.

2.1 TARGET READERS

The Value+ Handbook is a guide for project co-ordinators, project leaders and project promotersof EC co-funded projects that are health-related.

In Value+ terms, a project co-ordinator is a staff memberin charge of managing a project within an organisation;a project leader is the organisation which leads theconsortium implementing a project; a project promoteris an organisation or an individual promoting politically orfinancially a project without necessarily being involved inits implementation. Throughout the handbook we referto all of them collectively as project actors and we namethem individually when what we write is specific to oneof them.

We envisage that other potential readers could be:

• People who plan to be co-ordinators of Europeanhealth-related projects

• Patient organisations which, or patients who, wantto play a part in a European co-funded projects

• EC personnel such as project officers.

The handbook assumes that most readers will not befrom patient organisations, may not have any experienceof being a patient and may have little or no previousexperience in involving patients and patientorganisations in projects.

Project actors will have different levels of experiencerelating to the project’s topic of concern (whatever thesubject matter is e.g., health, research, policy, ortechnology), to project coordination and to patientinvolvement.

Whatever their individual role is, all project actors arelikely to need information on:

• What they as co-ordinators, leaders and promotersneed to know about patient involvement

• How they can concretely involve patients and theirrepresentatives.

Finally, EC personnel may wish to read this handbookand to recommend it to the projects with which theyliaise. These officials include project officers, policyofficers, or scientific officers who may head up differentsectors of expertise or even particular departmentsor units.

2.2 OVERVIEW OF THE HANDBOOK

A handbook is a reference book which offers concise,factual information on a specific subject. It is intendedto provide reference materials for its readers, organisedsystematically for quick and easy access.

The handbook assumes that most project co-ordinatorsand project leaders already know about running a projectat least in theory, if not in practice. For this reason, wehave not specified how to manage European projects.We have, however, make some generic observationsabout European projects and their characteristics.

The handbook contains six chapters and some annexes.

The information in each chapter is as precise and factualas possible. Some chapters contain a number of tipsor ‘how tos’. This is particularly so in Chapter 5 aboutprojects, and Chapter 6 about working with patientorganisations.

The chapters explain the main aspects of patientinvolvement in health-related projects. The topics are:

• What the Value+ project was about • Purpose and readership of the handbook• Why involving patients in projects is important• What patient involvement and meaningful patient

involvement are about • Identifying and approaching patients, patient

organisations, and other support groups • Working with patients and patient organisations in a

project • Capacity-building issues related to patient

involvement in projects.

One of the handbook annexes provides a list of usefulreading material that includes many of the most relevantarticles, books, papers, and websites on differentaspects of patient involvement in projects.

For this reason, the handbook does not includea traditional bibliography. Nor does it cite referencesthroughout the book in the way that a more academicdocument would do.

The handbook is focused on how to involve patientorganisations and patients in European Commission

co-funded health projects.

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All About the Value+ Handbook

There are quotations and illustrations of facts andfigures about health-related projects. These are boxeslocated throughout the handbook that contain simplequotes or pull quotes. They are to be found particularlyat the start of each chapter. Simple quotes are takenfrom the handbook text directly. The pull quotes havebeen taken from comments made by members ofprojects that the Value+ team has studied. For example,they are project members to whom the Value+ projecthas sent questionnaires, and with whom it hasundertaken interviews or held focus groups. The variousfocus groups organised by the Value+ project haveenriched the general thinking of the Value+ team,and they have given patients and other stakeholdersinvolved in the project a distinct voice.

2.2.1 The handbook annexes

The handbook has several annexes.

The first of these annexes (Annex 1) is a glossary.Wherever a word in the handbook is underlined, it isdescribed in more detail in this glossary. Readers needto turn to the glossary for more explanation on anyunderlined words.

A second annex (Annex 2) concentrates on goodpractice in patient involvement in European projects.

A third annex (Annex 3) focuses on pointers for how and where to find information on patient organisations,patients’ conditions and patients’ rights.

The last annex (Annex 4) contains some tools developedby Value+.

2.3 RELATIONSHIP BETWEEN THE VALUE+HANDBOOK AND THE VALUE+ TOOLKIT

A toolkit is a collection of tools. The Value+ team hasdeveloped a number of tools that are collected in acompanion volume to this handbook called the Value+Toolkit.

The Value+ Toolkit contains models, methods, andtechniques that patient organisations and patients mayuse to facilitate their involvement in a European project.It is aimed at patient organisations which and patientswho want to play a part in a European project. It mayalso be of use to anyone else who wishes to involvepatients in a project and for this reason project actorscould benefit from reading it.

The two documents are complementary. The handbooksometimes draws on work developed in the toolkit,including some tools that the Value+ team has createdor improved and that are described in far more detailin the Value+ Toolkit.

Where relevant throughout the handbook, referenceis made to the Value+ Toolkit. Where there arecomplementary links between the handbook andthe toolkit, the handbook highlights these.

The toolkit has useful sections that describe ways andmeans of overcoming various barriers to meaningfulpatient involvement in health-related projects.Various parts of the toolkit are strong on waysof communicating with patient organisations,on overcoming various causes of stigma for the patientsor patient representatives who wish to get involved inprojects, and developing good practice in involvingpatients as volunteers or fellow workers.

Chapter 4 of the toolkit is helpful in describing mattersthat patient organisations need to be awareof and that can help them in preparing for gettinginvolved in an EC co-funded project. These include:understanding the administration involved in preparinga proposal and running a project according to ECrequirements; how to become a partner in projects;how to overcome a lack of information and knowledgeabout funding programmes; and how to buildpartnerships with patient organisations.

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Why isPatient Involvement in

Health-Related ProjectsImportant?

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The Value+ project has concentrated on the meaningfulinvolvement of patients and patient organisations inEuropean projects.

As background, it is useful to understand the generaltrends that are taking place in Europe on patientinvolvement, since these shifts lie behind thedevelopments in many European projects.

Patient involvement is increasingly important in the healthsystems of Europe today. It will become even moreimportant in the future because it is at the heart ofimprovements needed by European health systemsand services.

Overall, it is particularly useful to distinguish betweeninvolving patient organisations in projects, and involvingindividual patients. The two approaches are possible butsubstantially different. Involving a patient organisationmay give greater legitimacy and accountability to theinvolvement because the patients who are nominatedwill be representative of the interests of patients witha particular disease or condition, and will act inrepresenting them as a community.

This chapter looks at the general background to patientinvolvement as expressed in the literature. It also outlinessome of the more political reasons for encouragingpatient involvement, and finally highlights how projectscan benefit from involving patients and patientorganisations.

We consider that, having such a broad vision of patientinvolvement is particularly important for the projectactors of EC health-related projects.

3.1 WHAT THE LITERATURE SAYS ABOUTPATIENT INVOLVEMENT

The Value+ team undertook a literature review on patientinvolvement through a rigorous search of the MedlinePlus database. We had access to academic andscientific articles and articles published on the Internet.A systematic review of the barriers, models, and trendsto patient involvement was covered.

Literature from various international organisations suchas the EC, the Organisation for Economic Co-operationand Development (OECD), and the World HealthOrganization (WHO) were explored by the project.Literature from seven specific countries was alsoaccessed: two countries were from outside theEuropean Union – Australia and Canada, and five werefrom within the Union – Denmark, Finland, France,Germany, and the United Kingdom.

An executive summary of the literature review andthe full report outlining all the literature uncovered areavailable at:

www.eu-patient.eu/projects/valueplus/resources/attached_documents/valueplus-literature-review-on-patient-involvement.pdf

The literature review showed the Value+ team a greatdeal about what academics and researchers haveto say about patient involvement in healthcare.Even though it offered very little information aboutwhat patient involvement means in terms of Europeanhealth-related projects specifically, there are someinsights enforcing the importance of involving patientsand their representatives that are valuable also ina project context:

• The growing emphasis on patient involvement islinked to the emerging of concepts like patient-centred healthcare and patient empowerment.The first called for a new, more humanistic approachto healthcare that would take into account not onlythe disease but also the patient’s experience of it.The literature indicates that among the coreprinciples of any patient-centred healthcare model,patient involvement and participation are alwayspresent despite the differences of models.

• There is a high and uniform recognition of patientsas central to the achievement of better efficiency,effectiveness and quality of healthcare systems.However the level of impact of patient involvementvaries due to a complex set of variables that areresponsible for the degree of openness to patientsand patient organisations’ engagement.

Citizens in Europe are increasingly called on to actas the masters and mistresses of their own health

and well-being.

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• Patient empowerment is still very weak, undevelopedand, for some aspects, ‘artificial’ and ineffective.Although we can distinguish three main levels ofpatient involvement, only one of these is sustainableover time; that is the higher level of patient involvementwhere patients are part of the decision-makingprocess.

3.2 BENEFITS OF INVOLVING PATIENTS ANDPATIENT ORGANISATIONS IN A PROJECT

Project co-ordinators and project partners who arenot themselves patient organisations often have littleknowledge of patient involvement. Patient organisationstherefore have a core role to play in educating andsupporting health professionals, civil servants, policymakers, and researchers involved in projects aboutpatient involvement.

Value+ identified a number of benefits that patients andpatient organisations can bring to projects. Those wehighlight below were voiced by the project co-ordinatorsof European projects in a workshop organised duringthe course of the project:

Motivation Patients and patient representatives showa very strong commitment towards achieving resultsand have remarkable motivation in being involved andcontributing. Value+ experienced clear examples ofthis motivation. A patient (representative of a patientorganisation at the same time) involved in the Value+Steering Group dedicated his free time to the project.Some patients who participated to the focus groupscancelled personal previous engagements or travelledwith difficult health conditions to be present and offertheir views.

Addressing appropriate issues Patients understandthe patterns and experience of their disease best.The perspective they bring is extremely helpful inensuring that a project makes a correct andcomprehensive problem analysis and sets objectivesand activities that will contribute to finding solutionsto the issues identified, and ultimately bring benefitsto the patient community.

Validating project outcomes The input of patients andtheir representatives is important not only for definingneeds but also for validating the results of a project,whether those are good practices, guidelines, policyrecommendations, services or technologies. If these arenot welcomed by patients as useful, they will not havemuch impact in the long term.

Dissemination The EC places great emphasis onthe dissemination of the outcomes of projects tohealth stakeholders so that there is an efficient sharingof good practices and knowledge. Clearly patientsand patient organisations are key addressees of thisinformation as well as important channels to deliver it.Patient organisations’ contacts with grassroots patientsare crucial for effective project dissemination work.

Patient-friendly communication Health projects oftenproduce communications targeted explicitly at patientsor that have to be accessible also to patients amongvarious other audiences, e.g. brochures, guides,websites. Patients and patient organisations are bestplaced to advise on how to define messages, in whatform these should be delivered, through which channelsthey should be communicated, and finally onaccessibility issues for patients with impairments.

Funds Project co-ordinators were of the opinion thatpatients and patient organisations can bring financing.There are patient organisations with high status, visibilityand capacity which can attract funds. Moreover, the ECas well as other funders are increasingly keen to ensureinvolvement of key stakeholders in projects, includingend-users. Having a strong patient involvement cantherefore be considered an asset, and may influencepositively the EC project evaluation teams in chargeof selecting projects to recommend for funding.

Empowering patients Project co-ordinators thought thatit is necessary to strengthen the influence of patientorganisations to give patients a more important placein the decision-making. In a project context, suchempowerment translates into the stronger capacityof patient organisations and patients to contributeto the project work.

There are a number of benefits described by patientsand patient organisations that are detailed in Section 2.3of the Value+ Toolkit.

Why is Patient Involvement inHealth-Related Projects Important?

3.3 THE POLITICAL “WHY?” OF PATIENTINVOLVEMENT

The White Paper Together for Health: A StrategicApproach for the EU 2008-2013 (October 2007)states that “Building on the work on the Citizens’Agenda, community health policy must take citizens’and patients’ rights as a key starting point. This includesparticipation in and influence on decision-making, aswell as competences needed for wellbeing, includinghealth literacy”2.

The Council of Europe Recommendation No. R (2000)5 recommends the governments of Member States“to ensure that citizens’ participation should apply to allaspects of healthcare systems, at national, regional andlocal levels” and (…) “create legal structures and policiesthat support the promotion of citizens’ participation andpatients' rights, if these do not already exist”3.

A number of European Member States have begun toestablish patients’ rights in either their laws or in patientcharters. An overview of such legislation is available atwww.eu-patient.eu/projects/valueplus/resources/attached_documents/overview-of-patients-rights-in-the-member-states.pdf

These political and legislative developments clearlyshow that moving towards more patient-centredhealthcare systems is a declared goal of all Europeanhealthcare policy makers.

There are basically three reasons for thesedevelopments:

• European citizens have voiced their demands formore information about the quality and safety of theirown care and the care of others. These voices areincreasing in number as an awareness of the multi-dimensional character of health increases

• A desire to increase the legitimacy of EU policyoutputs by strengthening the involvement ofstakeholders, including patients

• At the socio-economic level, the costs of healthcareare increasing.

Four issues can be summarised as the main elementsof such socio-economic pressures:

• Demographics are changing in Europe, and there isespecially a growth in Europe’s population of olderadults and a reduction in the numbers of young people

• The increase in the number of people with chronicdiseases, and the challenge that this is placing onEurope’s health systems and services

• Resource pressures on what is often calledthe benefits basket

• Increases in the co-payment of healthcare that isexpected from individuals and from organisations.

Citizens in Europe are increasingly called on to act asthe masters and mistresses of their own health andwell-being. This increased responsibility on the part ofpatients also needs to be balanced by increased rightsthat are being recognised, and provided, by the variousMember States. Many Member States are trying inreturn to offer patients and citizens new responsibilities,i.e., for staying healthy and co-managing their condition.

Such shifts in the concept of responsibility will have tolead to a greater level of involvement of patients. It isimportant to introduce this expansion in responsibility-taking and involvement in parallel with a means ofcapacity-building. New tasks and responsibilities thatpatients may need to take on both individually andcollectively are worthwhile trialling and piloting.

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Patient representation in healthcare decision makingand planning is an essential element of such

empowerment. In addition, patient involvement should become a baseline performance indicator

of health systems.

Commissioner Vassiliou, formerly of DG SANCO,www.eu-patient.eu/publications/

EPF_HealthLiteracyConference_2008_Report.pdf

2 http://ec.europa.eu/health/ph_overview/Documents/strategy_wp_en.pdf (Page 4)

3 https://wcd.coe.int/ViewDoc.jsp?id=340437&BackColorInternet=9999CC&BackColorIntranet=FFBB55&BackColorLogged=FFAC75

This shift will influence – it already does – how patientsare involved in health projects. All partners in Europeanhealth-related projects are likely to have to learn agreater understanding of each others’ needs, preferences,and preferred ways of working. Equally, they may have tolearn to make compromises and come to a consensusabout how bridges can be built across what may havepreviously been impenetrable borders.

Clearly, there is a huge amount of activity that still needsto be achieved to make progress on meaningful patientinvolvement in European projects. The same can be saidof projects that are taking place at the level of differentcountries, regions, and municipalities. Some countriesare making rapid strides forward. Others probably needevery bit of support that their patients, together withtheir health professionals, policy makers and healthauthorities can get.

The Value+ team hopes that its first steps alongthis journey can be followed by even larger, positive,steps in the years to come.

In this light, Value+ has itself made a number of policyrecommendations that relate to how greater patientinvolvement in health decision-making can moveforward. These proposals are not limited to the contextof EC co-funded projects with a health orientation; theyhave been expanded to encompass means of gettingpatients involved in health policy more widely. Theproposals relate to patients’ right to involvement,resourcing, and capacity-building. They cover a largeportfolio of constructive and concrete suggestions.

On resourcing – particularly in relation to EC health-related projects – the recommendations focus oneligibility criteria, contact points, waiving of co-financingprocedures, simplification of application procedures,and access to funds at national levels. On the right toinvolvement and capacity-building, they include:targeted policy documents, guidelines, codes ofpractice, and monitoring and evaluation systems.

It is very much hoped that these proposals andsuggestions could in future have important constructivemeaning for project co-ordinators keen to involvepatients more actively in their EC health-related projects.

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Why is Patient Involvement inHealth-Related Projects Important?

Value+ Policy Recommendations are available at:www.eu-patient.eu/projects/valueplus/resources/attached_documents/policy-recommendations.pdf

What is MeaningfulPatient Involvement?

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This chapter offers insights into both the patientinvolvement aspects of a project’s content and itsmanagement.

On the one hand, organising a project that includesmeaningful patient involvement is likely to be challengingfor non-patient organisations. On the other hand, a patientorganisation that runs a health-related project whichseeks to encourage patient involvement may find itsmajor challenge is to work with the partners in a teamwhich are not other patient organisations.

Encouraging and advocating patient involvement impliesa high level of commitment on behalf of the projectco-ordinator, the project partners, and the patientsor patient representatives.

Other issues that relate to equity and equality may beparticularly important for patients. In terms of equity,this chapter focuses on the example of gender in so faras it relates to the meaningful involvement of patients inprojects. Other aspects of equity (beliefs, disability, faith,philosophy, ethnicity or religion) would require similardepth of treatment. We selected gender as an illustration.

Overall, this chapter examines what the Value+ teamitself meant by patient involvement, and particularlymeaningful patient involvement.

4.1 WHAT PATIENT INVOLVEMENT ANDMEANINGFUL PATIENT INVOLVEMENTMEANT TO VALUE+

The review of the literature on patient involvement hashighlighted that while there is diversity across Europeanand non-European countries about the manner in whichto interpret and implement patient involvement into thehealthcare system, there is still a common challengeconcerning the concept of meaningful patientinvolvement.

The notion of meaningful in relation to patient involvementhas been coined by Value+. Other notions commonlyused could be ‘quality’, ‘extent’, ‘level’, ‘impact’ ofpatient involvement. All of them aim to qualify involvement.However, are these terms clear? What does quality orlevel of patient involvement really mean? A patient anda project co-ordinator might give very different repliesto this question.

Even without a specific notion attached to it, the conceptof patient involvement on its own may be understoodand interpreted differently. The Value+ team askedpatients, patient representatives and projectco-ordinators to give their own definition of patientinvolvement; these definitions were very diverse.

It is due to this ambiguity and lack of a common visionof patient involvement that the Value+ team decided tostudy meaningful patient involvement.

Patients and patient organisations are stronglymotivated to help develop health policy, treatmentsand healthcare that really do meet patients’ needs.Although patients are willing to give their time and effortto health-related projects, there are often barriers andchallenges to overcome.

Involvement in projects may not always have been asatisfactory experience for patients. It is important thatwe learn from these previous, negative experiences.

4.1.1 Definitions of meaningful patient involvement

Value+ did not have a ready-made definition to offer anduse to assess the projects. We wanted patients to sharewhat would make patient involvement meaningful for them.We asked the respondents to the survey questionnaireto give their definition and we discussed this withpatients at Value+ focus groups and seminars.

The focus initially was on finding a definition that wouldrelate to projects. Eventually, the Value+ team decidedthat a more general definition was needed and could beuseful in different contexts. This definition can apply toinvolvement of individual patients or patient organisationsin participatory or patient-led activities.

As a result of this process Value+ proposes the followingdefinition, which has been endorsed through Value+various forms of consultation.

Patient involvement is generally taken to mean thatpatients take an active role in activities or decisions that

will have consequences for the patient community, because of their specific knowledge and relevant

experience as patients.

What is Meaningful Patient Involvement?

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4.2 VALUE+ MODEL OF MEANINGFULPATIENT INVOLVEMENT IN PROJECTS

Value+ did not content itself with establishing a definitionfor meaningful patient involvement; we also wanted tocreate a framework that could be used in future projectsto plan, develop, implement and assess the involvementof patients in European projects.

This framework consists of:

• A Definition• A Model of Meaningful Patient Involvement• Indicators for Meaningful Patient Involvement • Assessment Grid of the Value+ Model of Meaningful

Patient Involvement• Value+ Levels of Patient Involvement.

Whereas the Model represents a conceptual frameworkfor involving patient organisations in projects, the otheritems listed are instruments that project actors may useconcretely in projects, no matter what the project topicis, whether patients or patient organisations areinvolved, and whether the project is European ora national one.

Although this framework is developed with the aim to beapplied for whatever type of project, there are aspectsthat project actors might need to adapt to fit theirpurposes and needs. This framework has received inputand comments from a number of people the Value+team consulted; it has been therefore been developedwith and endorsed by patients and patient representatives.The framework is drawn entirely from the Value+ Toolkit,for which it was initially developed.

We describe the Value+ Model below; the other itemsare in Annex 4.

Value+ Definition of Meaningful PatientInvolvement

Meaningful Patient Involvement means thatpatients take an active role in activities ordecisions that will have consequences for thepatient community, because of their specificknowledge and relevant experience as patients.The involvement must be planned, appropriatelyresourced, carried out, and evaluated, accordingto the values and purposes of:

• The participating patients or patient organisations • Other participating organisations and funding

bodies • The quality of their experiences during

the involvement activity.

The Value+ Model of Meaningful PatientInvolvement

1. Patients/patient representatives’ involvementat the beginning and throughout the project inplanning and decision making

Values: Respect for patients as equal partners,social inclusion of diverse groups, appropriaterepresentation of patients

Purposes: Ensuring that the project workingmethods encourage full participation by allpartners, that patient perspectives are fullyunderstood, that project outcomes are improvedby patient involvement, that the project takesaccount of gender and diversity issues

Methods: Patient organisations should work withprospective project partners to:

• Identify the project topic, or those aspects ofthe topic of most interest to their patients

• Identify what the special contribution of patientsshould be and how and where the patientorganisation or grassroots patients can beinvolved most effectively

• Identify the specific patient groups or otherpatient representatives who should be involved,taking into account age, gender, ethnicity andso on

• Take part in developing and costing thedetailed plans for these project activities, takinginto account the requirements of their patients,for example, information in different language orformats, needing someone to accompany themto meetings

• Develop a strategy for communication betweenpartners, and a strategy for supporting patientinvolvement

• Develop a strategy for monitoring andevaluating both the project itself, and patientinvolvement within the project.

If the project goes ahead with the patientorganisation as a partner, the patient organisationshould manage its own work areas and take partin the overall management of the project, makingthe strategies work.

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2. Co-operative working with other partners,supported by a clear understanding ofeach other’s roles

Values: Building on diversity and pooling knowledgeto achieve more than can be achieved by eachpartner working alone

Purpose: Effective use of project resourcesand expertise

Methods: The partners’ communication strategyshould include:

• Induction and training for all partners about theother partners, their roles and special expertise

• Induction and training about the communicationmethods which will support both patientinvolvement and communication withinthe project

• Opportunities to build working relationshipsthrough formal and informal activities

• An agreement about how each partner can fullyparticipate in project decisions

• An agreement about what should be presentedat full project meetings, and which topics arebetter suited to specialised subgroups.

3. Providing information and support forinvolvement, including clear communicationabout the project

Values: Equality, providing an empoweringenvironment for patients

Purpose: To enable patient organisations andpatients to contribute fully to the project, and to beinformed about the results of their involvement

Methods: The partners’ strategy for supportingpatient involvement should cover:

• The production of project information andproject results in a patient-friendly format

• The recruitment and induction of grassrootspatients

• Support and training for specific project tasks• The patient organisation’s support and

mentoring for grassroots patients • How to ensure continuity, if an individual patient

has to drop out• Acknowledgement of the contribution that

patient involvement has made to the project• The provision of information to patient

organisation and grassroots patients after theirinvolvement in the project has ended aboutthe impact of the project results once theproject ends.

4. Monitoring and evaluation of patientinvolvement from the perspective of allthe partners

Values: Commitment to ensuring that patientinvolvement is a positive experience which addsvalue to the current project and can be built onin the future

Purpose: To identify difficulties and possibleimprovements during the project, and learnlessons for future initiatives

Methods: The monitoring strategy should includeperspectives from:

• The patient organisation• Grassroots patients• Other project partners

and provide a check on:

• How representative the involved patients are,in terms of age, gender, disability, ethnicity,sexuality etc. of the patient groups which willbe affected by the project outcomes

• How all partners experience patient involvement• The contribution that patient involvement is

making to the project results.

5. Evaluation of the project’s results and impact,identifying how patient involvement hasenhanced the results

Values: Respect for patients as equal partners

Purpose: Full recognition and acknowledgementof patient contribution, improving the status ofpatient involvement.

Methods: The evaluation should:

• Acknowledge patients’ input• Record the reasons for not involving the patient

organisation or grassroots patients in particulartasks or work areas

• Record the reasons for including a patientrepresentative rather than a patient

• Record the reasons for not including patientrepresentatives of a particular patient group

• Describe how patient involvement shaped theproject, and achieved more than a similar projectwithout patient involvement could have done

• Include the impact of the involvement on thepatient organisations, and on the other partners

• Include grassroots patients’ own evaluationsof their involvement

• Identify the impact of the project results onhealth policy, and quality of care.

Value+ has also created several tools which can helpproject actors deal with certain aspects of patientinvolvement. These tools can be useful both with thepatients and patient organisations that are engaged inthe project but also with the other project partners.

• ‘Involvement opportunity checklist’: A Value+ toolfor describing an involvement opportunity

• ‘Short involvement opportunity information sheet’:This is an example that Value+ used to inviteparticipants to a focus group

• ‘Value+ Gender and Patient Involvement in HealthProjects Information Sheet’: This document highlightskey elements project actors should consider toensure gender equity in involving patients in theirprojects. It was developed by Value+ partners withexpertise in gender: the European Men’s HealthForum (EMHF) and the European Institute ofWomen’s Health (EIWH).

All these tools can be found in the Value+ Toolkit andValue+ website.

Another useful set of guidelines are those developed bythe International Alliance of Patient Organisations (IAPO),www.patientsorganizations.org/showarticle.pl?id=591&n=962. These guidelines were written for any organisationthat desires to involve a patient organisation or patients.

4.3 EQUITY IN PATIENT INVOLVEMENTIN HEALTH-RELATED PROJECTS

Many different aspects of patients’ rights are important.In relation to the equality of patient involvement inEuropean projects, it is important to be aware of severalcrucial issues. For individual patients, these include thepatients’ sex, racial or ethnic origin, religion or belief,disability, age or sexual orientation.

The Value+ team decided to concentrate on issues thatrelate to patients’ involvement in projects in terms oftheir gender. This choice was made because gender isone of the most concrete, evident, and emergent issuesin terms of patient involvement. It also serves to illustratethe considerable work needed in relation to other areasof diversity. Furthermore, there is already an ECrequirement to consider gender in projects, so therewas an opportunity to look at the impact of thatrequirement. The contribution of EMHF and EIWH wascrucial to unfold this aspect of patient involvement.They contributed significantly to this chapter.

4.3.1 Gender and patient involvement in health-related projects

Gender should definitely be considered in relation tohealth. Women and men should be treated equallywherever they have common needs. At the same time,their differences should be addressed in an equitablemanner.

Sufficient attention has not yet been paid to gender inEuropean health-related projects. This is especially thecase with regard to patient involvement. Focus, study,and research on gender and health is developing fast.There are so far no clear EU guidelines to supportgender considerations for patient involvementin health-related projects.

It is, however, hoped that the information in thishandbook will help to support:

• More informed considerations of gender• The way in which these considerations can enhance

patient involvement.

4.3.2 What is gender and why it is importantin health-related projects?

Women and men are different in relation to theirbiological maku-up (i.e., their sex). Women’s and men’sbiological susceptibility to disease and response totreatment can be different.

Gender refers to women’s and men’s different rolesand responsibilities in society, their access to resources(including information), their control of resources, andtheir decision-making power. Gender-based roles canhave a direct impact on health. These differences canhave a dramatic effect on women’s and men’s:

• Health needs • Health attitudes and behaviours• Roles in relation to health and healthcare.


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The TREAT-NMD project is undertakingresearch to explore, identify and examine

ethical and social issues in clinical researchof neuromuscular disorders.

One of the tasks of the research group incharge of this work is to monitor gender

equality in TREAT-NMD.See www.treat-nmd.eu/home.php/

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Women bear a disproportionate burden of care for theirfamily members. Care work is generally associatedwith a traditional women’s role and it is often largelyundervalued. This burden of care that women carrycan contribute to significant other health problems.

Men are often socialised to value risk-taking behaviours.They are less likely to seek help and support for theirhealth problems. They are also more likely to leadunhealthy lifestyles and to seek access to healthservices late.

Women’s and men’s biological susceptibilityto disease and response to treatment can be different.Symptoms, and responses to medicines, can varyaccording to whether a patient is a woman or a man.

Historically, women have often been under-representedas the subjects of scientific studies. This has at timesresulted in female patients being treated with medicinesthat have not been adequately tested on women.

There are differing ways in which women and men needto be approached with regard to health information,promotion, prevention, and disease management.These are often a function of the implications of thembeing male or female in society rather of their biologicalmake up.

Gender labelling of non sex-specific diseases can leadto under-diagnosis and incorrect treatment. It can alsocreate the under-representation of patients of onegender in projects where they should be representedin larger numbers.

Examples of particular health conditions, to which projectsmay be related, and where the genders may be under-represented include attention deficit and hyperactivitydisorder, cardiovascular disease, depression, eatingdisorders, osteoporosis, and lung disease:

• Cardiovascular disease is a major killer for menunder 65. It is often labelled as a male disease.Most studies have been carried out on men. Female symptoms can be different. They are oftennot diagnosed properly, even if heart disease isthe number one killer of women overall

• Osteoporosis is often considered as a female-onlydisease. However one in five men develops thecondition, many of whom are misdiagnosed

• Attention Deficit and Hyperactivity Disorder and lungdisease (including lung cancer) may affect significantnumbers of girls and women

• Depression and eating disorders may beexperienced by boys and men.

There are, of course, other conditions that are perceivedcommonly as affecting only one sex and not the other.Nevertheless, a significant proportion of membersof the other sex may experience these diseases.

4.3.3 Benefits of and tips for focusing on genderin health-related projects

Unless there is evidence to the contrary, both womenand men should be equally included in any project.

Women and men have different gendered experiencesof their health. It is therefore important that both theirviews are reflected in health-related projects.

Project outcomes may impact differently on end-usersaccording to their gender. The project design, includingthe research methods, and its implementation must takeaccount of gender differences among patients.

Selecting a mix of female and male patients and patientrepresentatives that reflects the expected impact of anyproject outcomes on women and men respectively, ismore likely to meet the needs of patients according totheir gender. Having a gender-sensitive approach torecruiting and involving patients in projects is important.Patients’ opportunities for participation in projects musttake account of gender differences.

Male patients are less likely to volunteer unless they areapproached specifically. Their contribution to health-related discussions is most effective in male-only groupswhen they are acting purely as patients. (It is, however,contended that this is possibly not the case when menare acting in a professional capacity).

Sex-disaggregated data (i.e., data that can bedistinguished according to whether the patients arewomen or men) is needed to assess the impact of theproject outcomes for both women and men.

People are born female or male but learn to be girls andboys who grow into women and men. This learned

behaviour makes up gender identity, determines genderroles and gender related health behaviours.

Main benefits of gender consideration in patientinvolvement Involving both female and male patientsand patient representatives in health-related projects can:

• Ensure more equitable outcomes by ensuringgender specific needs are also met

• Ensure gender equality by avoiding discriminatorypractices on the grounds of gender

• Increase the likelihood of a richer mix of perspectivesand contributions that result directly from patients’gendered experiences

• Increase the authenticity and corrective functionof patient feedback

• Ensure the adequacy of project outcomes in relationto the needs of the patients concerned.

Questions on gender for project co-ordinatorsHere is a list of questions that can be used by projectco-ordinators to help them orient their projects towardsgood practice in gender awareness. These questionscan help to ensure that gender is considered in health-related projects in relation to patient involvement.

The questions are worded generally enough that theycan be adapted to projects with other topics that alsoinvolve women and men.


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Questions on gender for project co-ordinators

Has the project considered whether its findingsand outcomes may have different impacts onpatients and other end-users depending ontheir gender?

Is there equal participation of women andmen among the patients involved in the project,or should the mix of female and male patientsbe aligned with expected project outcomes?

Have female and male patients or patientrepresentatives been involved in all stages ofthe project’s development and implementation?

Have any data collected and/or used bythe project been sex-disaggregated?

Have materials been developed that will appealto both genders or designed for each specificgender?

Are the appropriate project materials marketedto women and men respectively?

Does the project’s dissemination strategy take intoaccount the needs of both genders?

Co-ordinating Projectsto Involve Patients

Meaningfully

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This chapter looks at project co-ordination from theperspective of patient involvement. Where feasible,it especially targets European health-related projectsand outlines the different kinds of projects that a projectco-ordinator can expect to coordinate.

The chapter describes the typical different stages ofprojects and focuses on the patient involvement aspectsof project coordination and project management forthose stages.

It assumes that a project co-ordinator of a health-related project, whether it is large or a small project,will probably need to involve a patient organisation.

It raises awareness of and gives guidance on:

• How a project actor could promote the particularproject to a patient organisation or to patients

• How a project actor needs to support the patientorganisation or patients

• How important it is to involve patients and theirrepresentatives in project bodies charged withoverall coordination and decision-making

• The benefits of patient organisations leadingspecific activities

• How complex eligibility criteria currently are forpatient organisations

• How patient organisations and patients might benefitfrom having specific contact points or persons.

This chapter is not a how-to guide on project coordinationor project management. It does not prescribe how tomanage European projects. Rather, it assumes thatmost project co-ordinators already know about runninga project, at least in theory if not in practice. It doesmake some generic observations about what Europeanprojects are like, and what their characteristics often areas a form of background.4

5.1 BACKGROUND TO HEALTH-RELATEDPROJECTS AND GETTING PATIENTS AND PATIENT ORGANISATIONS INVOLVED

Generally, project coordination incorporates boththe content of a project (whether scientific, technical,or political) and its actual management. In some projects,these dual responsibilities are held by the same individualand organisation. In others, they can be separate.Much depends on the size and complexity of a project.

Basically, the larger and more complex a project, themore challenges there will be to run it – although,anecdotally, this is often disputed by project co-ordinatorswho say that comparatively much more energy andresources are devoted to managing a small projectthan a large project.

Projects may have different degrees or depths ofspecialism. A project may be an in-depth researchproject, it may facilitate a consultation exercise, or it maybe a means of capacity-building in areas that requireresources.

Patients and patient representatives who are attractedto be involved in a project may already be experts in aparticular specialism in their own right. Individual patientsmay wish to be included in a project as a means ofenhancing their skills and capacities in new fields orareas. All sorts of tasks and skills that patients of diversebackgrounds might seek to enhance can be imagined.

Of course, patients who are ready to take on involvementtasks are in fact experts in the management of their owndisease or condition; this can be an important reason inits own right for their involvement in a particular project.

The patient organisation may be one partner amongmany. It is important for the organisation preparing aproposal to think carefully about what the project wantsto achieve and how it will achieve it before it invites apatient organisation to join in the project consortium,just as it would with other prospective partners.

Health is an all-encompassing aspect of people’s lives.As a result, there are many different types of projects

that focus on it.

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4 There is plenty of official material available from the EC on the subject of project co-ordination and management. There is also a great deal

of literature on project management and organisation available more generally.

Vice versa, if a patient organisation is leading the searchfor a consortium, it needs to think carefully abouthow the other consortium members can contribute.Neither party should promise more than it can provide(whether in terms of resources, assistance, or support).Both parties need to think carefully, and plan for, thesupport that they need to give to each other as theproposal, and then a successful project, develops.

The process of planning patient involvement begins atthe project proposal stage. It should be monitoredthroughout the project so as to understand when andwhere any adjustments are desirable. Improvements topatient involvement can therefore be made throughoutthe lifecycle of the project.

5.2 DIFFERENT TYPES OF PROJECT

The EC funds and co-funds a wide range of projectsthat are health-related.

These projects can be very different. A project may bemore (or less) medical or clinical. It may be closer topolicy development or to the deployment of services.It may be more theoretical or it may be more applied.

In general, the projects that are co-funded bythe EC are much wider in their concerns than purelyresearch projects. The different types of projects whichcome under the umbrella of its co-funding cover a verywide scope including:

• Awareness-raising• Capacity building • Consultation• Service delivery• Fundamental research• Clinical trials• Research and development (including technological

development)• Policy (which of course includes health policy,

but could also include research policy or technologypolicy).

Each of these different types of project will have itsown set of aims and goals, will be of a different sizeand complexity, have different types of partners,and will have different levels of re-sourcing.

5.2.1 Selecting patient organisations and patientsfor the particular project

As a premise, it is useful to distinguish betweeninvolving patient organisations in projects, and involvingindividual patients. The two approaches are substantiallydifferent.

Being a patient is one side of the life experience ofa particular human being. Patients can also bring thecontributions and skills absorbed through their rolesin life as parents, administrative or industrial workers,professionals, or people involved in their community,faith-based organisation or civic society.

Patients may be willing to be involved in a projectprecisely because of these specialist, professional skills,but most likely they will want to be involved because ofthe skills and knowledge they acquired by simply beingpatients and living with their condition. However, beinginvolved in a project will not be a full-time job for them;project actors need to give considerations to this andother aspects explained in Chapter 6.

When considering a patient organisation as a projectpartner, the legitimacy, accountability, representativenessand transparency of that organisation are importantelements. Who the patient representatives are, and howthey are selected as a representative, are an importantset of choices. They definitely need to be people whoare competent to represent the official stance of theirorganisation with regard to the disease or condition atstake. The governance of the organisation is anotheraspect.

As a project co-ordinator and project leader, it can beworthwhile considering at an early stage of planning andpreparation what kinds of relationships project partnershave had in the past with patients and patientorganisations and what kinds of relationships theywould like to develop in the future. The questionsbelow can help with this thinking.

The Eurogenguide project has gatheredinformation about genetic testing, counselling

and research across Europe, by involvingpatient organisations and reaching grassroots

patients through an online survey.This information is now on its website.

See www.eurogenguide.org.uk/

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Co-ordinating Projects toInvolve Patients Meaningfully

The Salut project developed Internet-basedsystems to improve diagnosis and services foreat-ing disorders. Patients were involved in theprocess. Internet-based therapy is now availableand in use. See www.salut-ed.org/index.php/

They are purely ‘starter questions’ for a further set ofconcerns. Wider preoccupations will include: what kindsof experiences related to patient involvement peoplehave had, what their feelings about those experiencesmight be, how all the partners involved could seek toimprove circumstances and behaviours, and whatadditional resources and policy improvements canhelp to enhance the future experiences of patientinvolvement for anyone working in the project.

Many tools that are provided in the Value+ Toolkit canhelp project co-ordinators to move in this direction.

5.3 PROJECT STAGES AND PATIENTINVOLVEMENT

Projects have different stages. This set of stages is oftencalled the project lifecycle.

A range of different interaction with and support topatient organisations and patients, might be neededin a project as it unfolds.

Projects co-funded by the EC usually involvethe following stages:

• The Call for Proposals is launched, there is an‘expression of interest’, and potential partners cometogether

• Proposal drafting and submission• Evaluation process• Negotiation meeting• Project start or ‘launch’• The day-to-day running of the project• Dissemination of a project’s news, developments,

and outcomes• Project review(s)• The project end.

The EC also encourages other kinds of initiative.These include public consultations, dedicated studieson very specific topics, and pieces of consultancy orpolicy guidance that support the work of the EC officials.

The Value+ Handbook concentrates only on Europeanprojects, and not on other forms of patient involvement.There are also many developments in patientinvolvement in projects at a national level with which aproject co-ordinator or partners may want to get moreassociated. Some of these activities are very closelylinked to patient involvement. Others are steps that canhelp patients become more motivated to get involved incollective issues affecting patients (e.g., working on theirown care and treatment).

Other options which exist may involve:

• Strengthening patients’ skills and capacities• Learning-by-doing• Getting patients involved in their own care and

treatment• Lobbying to improve patients’ conditions• Lobbying to enhance patient outcomes (prevention,

treatment, recovery)• Linking academics with health service users• Influencing policy discourse and decisions.

Considering how project partners mighthave interacted with patients and patientorganisations in the past

• Are there project partners who are patientsthemselves?

• How many know about international, national,or organisational policies that offer guidancetowards better patient-centred healthcare andpatient involvement?

• Do the partner organisations have patientinvolvement policies?

• Have project partners had a professional ora policy-related relationship with patients?(They may for example be making local,national, or regional decisions that affectpatients).

• Have project partners previously workedprofessionally with patients as patients,or with patients as colleagues?

• How many have only a ‘literature-based’understanding of patients’ needs?

• Do project partners run establishments thatsupport patients (such as general practicemanagers, clinical managers, hospitalmanagers)?

• Are project partners developing equipmentor services that will be used by patients?

• How many develop publicity and publicrelations’ materials for patients?

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During the course of the Value+ project, projectco-ordinators often asked us a number of questions.They wanted to know:

• When (i.e., at what stage of the project) is it suitableto involve patients in European projects?

• In what activities is it most effective to involvepatients?

• How is it possible to find patient partners or partnerpatient organisations?

This chapter talks about these questions at theappropriate stage in the project. It also deals with thesekinds of issues in Chapter 6.

Patients, and patient organisations, can – and in manycases should – be involved at all stages of a project.This position was strongly supported by Value+ projectmembers and by the patient representatives and patientorganisations to which Value+ spoke.

These patients and their organisations may, of course,be different patients with different competencesdepending on the type of project which is underconsideration, and the particular stage of the project.

As a general rule, an equal involvement betweenwomen and men at all stages of project developmentand implementation is more likely to add value toproject outcomes.

Here are some examples of stages of projects andpatient involvement. Some patients thought thatparticular stages of a project were more important thanothers. Among patients’ suggestions for key stages ofprojects where they would wish to be involved are:

• Finding a proposal idea• Drafting a proposal and submitting it• Disseminating news about projects, and their

developments and outcomes• Keeping patients up-to-date about project

outcomes.

To dedicate time, resources, and effort to this degreeof patient involvement could mean that a projectco-ordinator may consider it important for a project(or at its earlier stage, the project proposal) to dedicatea particular person to liaising with the patients or patientorganisation. Chapter 6 of this handbook gives moredetail of what may be required.

Of course, if the proposed project co-ordinator is apatient organisation, the organisation will also have todedicate a particular person to liaise with patients.

Lastly, it may be that the liaison that occurs could simplybe with a single person or patient. This will have itsbenefits (i.e., ease of contact with a single person).However, it may mean that a single individual or patientcan become easily overloaded (just as all people maybe overloaded if they are the sole person who is workingon an initiative). Patients may, however, have particularchallenges because of their health status; for example,they may experience chronic fatigue, and they may haveregular medical appointments and treatment regimes.

5.3.1 Finding a proposal idea

To find an idea for a project proposal, project actorswill need to monitor what ideas are coming up withinthe particular health-related domain of the EC, andknow what the upcoming programmes and calls are.

Involving patients or a patient organisation at this stage,prior to submitting a proposal, usually requires a goodknowledge about the landscape of patient organisations,and their organisational capacity and individual skills.More details on how to identify and approach patientorganisations are provided in Chapter 6.

Calls for proposals, and their support information,need to be understood carefully and in detail. At thisstage, it is important to be honest about the consortium’scapacities and expectations in order to submit a credibleproposal. A proposal based on a misunderstanding ofthe funding call, or aimed at a consortium’s own interestsin an attempt to fit pre-existing expectations rather thanthe call’s objectives is unlikely to be successful.

It could well be that the patient involvement element ofa project proposal is what makes the proposal special,different, and gives it particular value. Additionally, patientinvolvement in projects is highly likely to become anincreasingly common characteristic.

A proposal idea should be formulated in a way thatthe added value of its patient involvement is apparent.What can this particular group contribute to the prioritiesand objectives formulated in the call text that anotherconsortium will not be able to contribute? Involving apatient organisation or more than one patientorganisation can indeed make a crucial difference here.

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Clearly, here also, some consideration has to be given tohow the various eligibility criteria would affect a patientorganisation, how a patient organisation would complywith the application procedures needed to apply for anEC project, and how the organisation might match anynecessary co-financing. This is an area where theorganisation leading the project or the partners mighthave to provide support to enable the patientorganisation to get on board in the project.

5.3.2 Proposal drafting and submission

It is important to make sure that a proposal matchesvery tightly the kind of work programme and the kindof call to which it is submitted. The EC tries, through thekinds of clear publicity that it gives to calls, to encouragesubmitters to put in only well-targeted proposals.

During the phase of proposal drafting, a project teamneeds to be tightly knit together, and for its membersto be able to trust and rely on each other. There maybe many discussions about competences, capacities,and resources. The proposal itself will need to undergoa careful drafting and writing process, and – almostcertainly – be subject to very tight deadlines.Value+ has developed a ‘Capacity and Skills for anEC Project Checklist’ that can be used by all partnersto identify what they can contribute to the project.The checklist in available in the Value+ Toolkit.

Involving patients or a patient organisation in this phaseneeds to be carefully planned. Like all partners, they willneed to have a clearly pre-defined role and inputs.

As a potential partner, the patient organisation will ofcourse be one of the parties to the agreement aboutthe proposal planning and outline.

Like other partners, patient organisations may expect totake part in contributing to the whole project proposal.Indeed, there may be circumstances under which apatient organisation would contribute to all parts of aproject proposal. If this is to be the case, the projectco-ordinator leading this process may need to devoteconsiderable care and attention to the patientorganisation’s involvement all the way through the process.This will be necessary if the patient organisation doesnot have a long history of involvement in proposalwriting; more interaction might be required to ensureappropriate content and quality of texts. This wouldinvolve not only resources, time, but also probablythe direct attention of a particular person.

Often in reality, project partners contribute only toa specific part (or sometimes parts) of the draftingof a full project proposal. Of course, all partners may beencouraged to comment on a full draft proposal once itis ready. In this sense, a patient organisation would be nodifferent in its involvement from any other project partner.

A good pre-condition for the involvement of a patientorganisation is for it to be assigned to write a specificsection in the proposal. The writing of this text willundoubtedly be where the patients’ special expertiseabout their condition and experiences comes in. It cancontribute this part of the text once the overall outline ofthe proposal has been agreed or it may also, of course,be intensively involved in a discussion of the parts ofthe project in which it will be closely involved.

A proposal contains both a description of the intendedproject’s work and the accompanying administrativedocuments (which concern the legal and financial statusof the consortium partners). Organisational professionalismis required of every project partner – including thepatient organisation – in order to comply with theseEC formalities.

This stage of proposal-writing can establish how partnerswill work together. From a patient organisation’sperspective, it is worthwhile encouraging involvement,and building relationships well before the proposal isthought of and designed.

A proposal, however, is usually written at high speedand within a very limited time-period. Different parts ofa proposal can be written by a wide diversity of people.It is the project co-ordinator of the organisation leadingthe project who takes the ultimate responsibility to ensurethat all the parts are brought together appropriately.

This means that the actual process of close workingtogether may be subject to considerable pressuresduring the proposal drafting and submission. Often moreattention is paid at the point of the project launch to“getting to know you” among all the partners, and withthe patients or patient representatives. This may be asmuch because – at this stage of preparation – there arehigh risks that a proposal will not be successful.

The proposal submission date, and even its time ona particular day, is very carefully stipulated by the EC.It is crucial to comply with these details. All partners –including the patient organisation – should be madeaware of the tightness of this deadline.

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The resources dedicated to this preparation, planning,and time-period, should be seen as an investment forthe future, but one which is costly (including financially)to all the potential partners involved since the EC doesnot provide funds for it.

The handbook is not intended to guarantee successin submitting proposals to the EC or in having theseproposals accepted. Proposal submission, and successin getting projects accepted, can be a challenging andonerous procedure.

Agreeing on a project’s objectives Wherever possiblein health-related projects, patients or patientrepresentatives should be involved in helping to stipulatethe objectives of a project. Project objectives need to beclosely aligned with the general objectives of the call forproposal or call for tender; however, there is still someleeway for a project consortium to fine-tune theobjectives to match its particular vision.

Your objectives need to be SMART: specific, measurable,achievable, realistic and timely. If the patient organisationor patient involved in the proposed project has littleexperience of formulating objectives, a clear formulationof such objectives may be a process which needs evenmore time and resources than usual.

Generally, patients and patient organisations should beencouraged to understand their roles and be motivatedby them. Indeed, when they have a stake in theformulation of a project’s objectives, their commitmentto the project as a whole is likely to be higher.

It is worthwhile remembering, even at this early stageof thinking, that – if a project is successful in submittinga proposal – all the partners should consider quicklywhat will be the means to maintain the outcomes ofthe project once it has ended. How would products beturned into services or into revenue-generating activitiesin the future? In some countries, projects are started upwith the notion that they must becomes self-supportinge.g., at the end of a three-year period.

5.3.3 The evaluation process

During the time around the evaluation period ofthe proposal, and the time immediately following it,is important to manage the expectations of all partnersto the proposal, including the patient organisation(s).

Partners have put a great deal of time and effort intocreating the proposal. If the patient organisation appliesregularly to EC funding, it will know that frequently itis not successful in its submissions. If it is new tothe adventure, the organisations’ members may bedisappointed by the effort they have put in especiallyif the proposal receives a negative result.

Few proposals are successful, sometimes the ratioof success to failure is as high as 1:12 or 1:10.Sometimes proposals become successful after theirthird or fourth submission (providing that they areappropriately re-designed for a new call).

So far, health-related projects in the Directorate-Generalon Health have benefitted from a lower ratio of submissionto acceptance: in 2007 and 2008, for example, as manyas 1:5 or 1:4 health-related proposals were successfulon submission.

In a time of socio-economic difficulty, it is likely there willbe a growth in submission of proposals to the EC to doprojects. Submission ratios may therefore climb evenhigher. Also, as publicity gets better, more people willsubmit. The evaluation process is fully in the handsof the EC. It cannot be influenced by any member ofa project team, and no member of the team should tryto exert any pressure in this way.

All partners including the patient organisation, andespecially the project co-ordinator, will be keen to learnabout the results of an evaluation. The results may takesome time to materialise – from weeks to months,and in exceptional cases, may be even up to a year.

The results of the evaluation are communicated tothe project co-ordinator. They highlight the strengthsand the weaknesses of the proposal. It is the projectco-ordinator’s job to inform all the partners (including thepatient organisation) of the result of the evaluation whenthe news is eventually received from the EC. It is likely thatthe patient organisation, just like all the other potentialproject partners, will be awaiting the results eagerly.

This next sub-section assumes that the proposalsubmission is a successful one. Congratulations tothe success project proposers, including the patientorganisation, on having gotten so far!


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5.3.4 The negotiation meeting

The negotiation meeting is a critical moment for thedevelopment of any project. It means that the projectproposal was successful as far as the evaluation isconcerned.

Now, the proposal needs to be fine-tuned to takeinto account any comments that emerge from theevaluation, to meet the specific needs of the EC, and tocomply with any reduction in budget. This will need tobe done within a given timeframe (and will often besubject to tight deadlines).

Of course, no negotiation outcome is guaranteed.The eventual likelihood of the proposal being turned intoa project depends on the success of the negotiations.This means that the project team will need to adapt itsinitial ideas to the suggestions made in the evaluationfeedback, and to any requests made by the EC.

A negotiation can take place physically as a meeting,over the phone, or sometimes via email.

In the situation of a physical meeting, only the key partnersof a potential project attend a negotiation meeting(they represent, for example, the project co-ordinator,the theoretical part of a project, the project managementaspect of a project, its financial component, and possibly– if necessary – any legal component. In any case,the number of persons who attend such a meeting isgenerally quite small (e.g., 4-8).

Other partners usually give the project representatives,who are negotiating the project details, a mandate tonegotiate on their behalf. Unless a patient organisationis a key partner in a project team, the presence ofpatient representatives is rather unlikely in this setting.

Of course, it may be that the patient component ofa proposal is particularly strong or intensive, or thatthe evaluators have asked for any information aboutpatients to be especially strengthened or defended.This may mean that the presence of a representativefrom a patient organisation or a patient may beespecially welcome at a negotiation meeting.

When a patient organisation participates in anegotiation meeting, the project co-ordinator willneed to work with the organisation (or the individual) toprepare the meeting carefully and to give appropriateinput during the negotiation.

A negotiation meeting is likely to follow a specificschedule or agenda. The EC may be represented byseveral officials or only by one official. Mostly the contentof the meeting will be formal and will concentrate ona set of key questions. It is also highly possible thata short PowerPoint presentation may be needed.Certainly, answers to the evaluators’ questions andto specific questions or points raised by the EC willbe needed.

It could be worthwhile, for all partners, including patientorganisations, to rehearse with its representative anypresentation of PowerPoint slides, the questions thatmay be asked and the answers to be given, and to talkin a very clear way about the way in which the meetingwill be run.

Let us suppose that the negotiation phase is successful,and that all the revised technically-related andadministratively-related paperwork has beensubmitted in due time.

A project generally starts in the month following thesignature of all the official documentation and possiblyeven on the first day of the month following this signature.It is important to let the patient organisation, as one ofthe project partners, know this as soon as possible sothat it can plan accordingly.

5.3.5 The project start or ‘launch’

This is when the concrete activity of the project starts.It is important for a project team to take advantage ofan early start and not to waste any time in starting up.This can, of course, be challenging if it is a holiday-period of the year. For patients, it could be especiallychallenging if it is a period when they are undergoingany form of treatment.

A critical step is the organisation of a first internal projectmeeting. It is important that, at this meeting, there is afurther agreement among participants about the planningof the project work, the distribution of tasks, andimportant intermediate goals. The meeting should alsoclarify the administrative duties of each participants andhow the co-ordinator will interact with each projectparticipant.

This launch meeting is likely to be very important forthe patient organisation in the project team. The launchmeeting can provide an opportunity to build workingrelationships; some informal time or working in smallgroups may help with this. If a patient organisation andits member(s) cannot join the project at the launchmeeting for any reason, it will be important to makethem feel welcome at future meetings.


Once the project has started, a whole range of areasof involvement is possible for patients or patientorganisations.

5.3.6 Day-to-day running of the project

Two important aspects of a project are decision-makingand coordination of activities. One of the EC requirementsis to have a sound management structure; this translatesin practice into the establishment of a project SteeringGroup or Committee where all the partners are involved.

The main role of this body is to make decisions relatedto the project and to give guidance.

Patients and patient representatives should also bethe owners of the processes in which they are involved.They should therefore be involved in the decision makingrelated to the project as much as possible. At all times,they should be informed about the rationale behindactions which may sometimes be requested in a moredirective tone by the co-ordinator.

All projects have a contractual commitment to producework and deliverables as a result of documentation thatwill have been signed with the EC. There will be timeswhen a more participative or collaborative style, thatpatients may desire, could not be feasible because ofurgencies or other priorities in the work process.

With regard to the overall project coordination, a veryimportant part of activities for a project co-ordinatorleading the consortium in the day-to-day running of aproject is the follow-up on actions agreed, the coordinationof activities among partners, and the contact withthe project’s project officer.

Usually some project partners take the lead incoordinating a specific set of activities, in EC terminologythat is called a work package. Due to the uniqueexpertise patient organisations have, it could be worthassigning to them the lead of a work package that canbenefit most from their competence. This can varydepending on the project.

Some projects set up advisory boards or users’ interestgroups. If a patient organisation or a patient does nothave the capacity, resources or time to be involved inthe whole project, this can be a good alternative toensure some form of patient involvement. However, theproject co-ordinator should be careful to be clear aboutthe specific role and the expectations. Also, the patientsand patient representatives involved in this functionshould received appropriate resources and informationto enable them to be in the loop and give input efficiently.

5.3.7 Dissemination of project news, developments,and outcomes

Dissemination is frequently a very important outcome forpatients and their organisations.

Because patients and their representatives are expertson their own condition, they have awareness for howtheir conditions and diseases should be describedand they have a particular credibility which shouldbe used to communicate project results effectively.Patient organisations and patients may be involved in:

• Developing a project dissemination strategy• Designing or drafting press releases or similar

publications• Proof reading and approving them• Attending public meetings, conferences and

seminars as representatives of the project.

Patient organisations may also be involved in simplifyingthe language used in projects so as to facilitate ordinary(‘grassroots’) patients’ understanding of the project’smessages, or ‘translating’ the words of various healthprofessionals.

Sub-section 4.9 of the Value+ Toolkit highlights sometips that may encourage the meaningful involvement ofpatients in this kind of activity. A project’s disseminationstrategy should include sending a short patient-friendlysummary of the results directly to any patients whowere involved only in earlier stages of the project, and,through appropriate networks, to grassroots patients.One project partner could take the responsibility forsending updates to the same patients on anydevelopments – or lack of developments – followingany lobbying activities.

The Value+ Toolkit warns, however, of tokenism: seesub-section 2.5.1 of the toolkit. It is important not toexploit patients and patient organisations or to use theirimages in a purely symbolic way.

Depending on the character of the project, it is evidentthat not all the patients or patient organisations involvedin a project may be responsible for disseminationactivities. Their levels and areas of involvement may bequite varied. They may be active in project domainswhich do not lend themselves to dissemination work.

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5.3.8 Project reviews

A review of a project can be undertaken in a variety ofways during the project.

Project reviews generally occur every 12 to 18 months,depending on the actual duration of the project.

They may be handled either at a distance by an expertin his or her office (or home) or at a location specified bythe EC.

Let us suppose that the project review is a physical one.Depending on where the relevant EC personnel arelocated, examples of locations could include eitherLuxembourg or Brussels. It could also be at some otherplace of convenience (e.g., before or after a conferenceor a workshop).

Depending on the kind of health-related project, a reviewcould be held in a location that has a relationship with thespecific condition or disease at stake. Examples couldinclude, at a patient centre, a care home, a hospital,or – if a technology is being produced – at a researchcentre or hardware or software development centre.If the project is mainly about users, it could take placein the office of a non-governmental organisation or evenin the office of a health ministry or authority.

Some considerations may include: Is the locationeasily accessible for the patients who will participate?Is special access, transportation, or equipment needed?If it takes place in the surroundings of another conferenceor workshop, are the physical conditions appropriate?If the review is held on-site in a health-related centre, howmuch will the review interrupt the centre’s daily running?These issues will all need to be foreseen and carefulplanning will need to take place to accommodate them.

There can be great benefits about holding a reviewon-site in a health-related centre or somewhere thatthe patients can get to easily. It can give the reviewersa very concrete and targeted view of what the project isdoing, how the patients are participating in the project,and what the patients are getting out of the project.If technology or equipment is to be seen by the reviewers,it may be that it will function more effectively on-site.

If the EC wishes to have the degree of patient involvementin the project assessed (or else some other aspect ofthe project which is important for the patient/patientorganisation) it can be appropriate to have a patientrepresentative or representatives present to answerspecific questions. This could become an increasinglysalient point as e.g., the degree of involvement ofcivil society is borne in mind in projects. Civil societyinvolvement in projects is already a criterion forassessment at the end of some projects.

Because a review meeting is a formal meeting,and much depends on its outcomes for the successfulcontinuation of a project, it is worthwhile spendingconsiderable time understanding the formal procedureof the review, planning the PowerPoint (or verbal)presentations to be made, the types of questions thatmay be raised and the kinds of answers that can begiven, and the meeting’s timetable. A rehearsal can beuseful. It will be especially appropriate to run throughthese procedures with all partners, including patientorganisation partners.

There are other types of project review. For example,in projects that liaise with the Executive Agency forHealth and Consumers, an independent reviewer(who may sometimes be called an “evaluator”) canbe assigned to the project throughout its duration.The reviewer may get the opportunity to comment bothon the content created by the project but also how it isworking (its process). The Value+ project trialled this sortof approach. It used its particular evaluator’s commentsto fine-tune and adapt the team’s behaviour andactivities as the project progressed.

In some areas of the EC, reviews may not take place atall – a project simply receives its financing and it runsuntil it has completed its tasks.

A project’s final review is particularly important for thesuccessful completion of the project, for the project andits partners to maintain their good reputation in the field,and for the project to receive all its planned-for funding.

Final reviews need to be taken seriously, are oftenintensive, and need considerable planning as well asfollow-up.

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A final review is often a more intensive version ofthe project reviews that the project partners mayhave experienced throughout its lifecycle.

Patients’ views on the success of the project and itsoutcomes may be particularly influential at this point.Their ideas about how to progress further withdissemination and publicity for the project, and abouthow they themselves, and their organisation, mayembrace the project results could be vital.

Patients who attend review meetings need to be wellbriefed and supported throughout the project’s lifecycle.This is especially so for a final review.

5.3.9 The end of the project

A key phase of any project is its final stage. Here aproject must show its success. It must also completeits administrative and financial responsibilities.

The end of a project will bring other aspects to the fore:the project team will have formed a relationshipthroughout the duration of the project.

What happens next, after the end of a project, may bea crucial issue for patients. Keeping patients informedabout a project’s outcomes is very important, so aproject co-ordinator should ensure that happens.

In Value+ focus groups, patients sent strong messagesthat they want to know what a project’s results are,what it achieved in terms of concrete results, what itsimplications are for future action or for possible policy.The EC generally has at least two expectations of itsprojects. First: the actual Member States in which theproject has taken place must benefit from and use theresults of a project. This may mean that patients needto look at what funding and support is available locally,regionally, and nationally to continue to implement thegood work that has been developed inside their project.Second: the EC does not support further or repeatsa particular project even when it has been highlysuccessful. Thus, any new proposal to be submittedfor more funding and resources needs to be innovative,dynamic, and cover new ground.

At this stage of the project – clearly, as well as all theway along the project – patient partners may developideas for what may happen ‘next’ or ‘after the project’.These ideas need to be captured by all concerned.It is important to explore in what way they canharnessed for the future.

It can often be a frustration for project partners includingpatients, that there is no obvious follow-up possible thatcan receive EC funding. This may be because policyorientations have changed, funding priorities havealtered or moved in new directions, and/or that thecurrent project forms part of a programme or initiativethat is towards its end.

It is crucial to manage carefully the expectations ofall project partners with regard to ‘continuity’ of anyproject, and not to oversell the possibilities.

Patient partners, in particular, need to understand clearlythat financing is made to a project to support it untilthe end of the project but not to sustain it after its end.Patient organisations may be encouraged to developideas for how the project outcomes may be takenforward by them in an effective way.

When a project is closed formally, it is an importantadministrative phase. It does not usually involve effortfrom project partners apart from the project co-ordinator,provided that adequate financial and qualitative reports,and agreed deliverables, have been submitted.

The EC does have a right to check on project financingfor a time-period up until five years after the end of aproject. So all projects partners, patient organisationsincluded, should keep their records for at least thatlength of time. Patient organisations that have littlefamiliarity with the type of records to be kept shouldreceive proper support by the project co-ordinator.

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Working With PatientOrganisations

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This chapter deals with the ways to identify and get incontact with patient organisations and patients who areliving with a particular condition or disease. It goes onto look at some aspects of the actual experience ofworking with patient organisations and patients. It drawson observations made in the Value+ Toolkit, and alsorelates working with patient organisations to the Value+Model of Meaningful Patient Involvement, referred tothroughout this section simply as the Value+ Model.Finally, this chapter examines the sustainabilitychallenges that face patient organisations.

6.1 BACKGROUND INFORMATION ONPATIENT ORGANISATIONS

The enthusiasm and motivation of patients and patientrepresentatives have been strong features of all theValue+ focus groups and workshops. They may havedifferent levels of knowledge, different skills, competenciesand life experiences which they bring to patientinvolvement. Despite this diversity, patient representativesand patients have a shared commitment to improvingthe healthcare and social circumstances of patients.Patient organisations have been built up as a directresult of this shared commitment. They have beencreated by patients and their families who have cometogether to work for improvements in healthcareand treatment.

There are clearly many different kinds of patientorganisations. They operate according to different typeof constraints (organisational competences, financialcapacities, and resources). The European MedicineAgency’s (EMEA) definition of a patient organisationcan be found atwww.emea.europa.eu/pdfs/human/pcwp/1461004en.pdf

Many – which are often well known at eitherinternational or national levels – were founded someyears ago and have built up strong organisationalfoundations, members, and supporters. They may haveconsolidated their competences, budgets, and the wayin which they organise their activities. They may haveprocedures for recruiting and managing volunteers.They may run useful courses and programmes.Although a comparatively young organisation, EPF fallsinto this category and has delivered capacity-buildingworkshops for other patient organisations.

Other organisations can be much smaller. They mayeven be very local, based in regions, cities, or townsin a particular geographic location. They may be locatedin urban environments or they may also be in isolatedregions or places. They may be based around aparticular clinic, hospital, or hospice. In recent yearspatient organisations have formed from Internet groups.

Other forms of territoriality affect patient organisations.They may be based around representation for aparticular condition or disease – whether this isa chronic condition or a rare disease.

Many patient organisations have the motivationand energy to look outside the boundaries of theirown members’ conditions and to work co-operativelywith other patient organisations at national orinternational levels.

More and more patient organisations are becomingpan-European and even international in theirorientations. They recognise that, although the ways ofhandling their condition may be very different in a rangeof countries, the conditions themselves are very similar.Patients are seeking increasingly to support each other,and offer each other information. There are greateropportunities to share information now using email andthe Internet. An organisation like EPF is pan-European,with member organisations which incorporate manykinds of conditions and diseases.

Currently, organisations that receive EC co-financingthrough projects are expected to conform to certainorganisational conditions and to be of a certain financialsolidity. The criteria emphasised by the EC are generallythose which would facilitate the organisation being a goodorganisational and financial partner in a prospectiveproject. However a consortium might gain great benefitsfrom the expertise of a less strong patient organisation,which could participate in a project with some supportfrom its partners.

It is important to be aware of the kinds of constraintswhich patient organisations experience. As a result ofthe work it has undertaken, the Value+ project hasmade a recommendation to waive the current fundingcriteria for patient organisations. It would like to seean easing of the funding parameters. In its PolicyRecommendations Value+ has said:

Project co-ordinators told the Value+ project that theywould like to have guidance on the tasks that patient

organisations can carry out.

Working With Patient Organisations

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“Waive the co-financing percentage for patientorganisations in EC Calls in consideration of the factthat they are not-for profit; most of them are run byvolunteers and often do not have access to loans orbank guarantees due to their annual turnover. …Simplify application procedures and set up specificCalls for small-sized not-for profit organisations andother types of organisations that have limited capacityto meet eligibility criteria of current programmes.”

6.1.1 Choosing patients and patient organisations

When a project decides that it wants to involve patients,it should decide whether to recruit individual patients orwhether to involve a patient organisation. If a patientorganisation is to be involved, the project can be guidedby the Value+ Model. This requires that patients orpatient representatives should be involved at thebeginning and throughout the project in planning anddecision-making, and that strategies for supportingpatient involvement are developed at the planning stage.Bringing a patient perspective into planning the projectmay lead to outcomes that other project partners wouldnot have thought of, or considered possible. It may bedifficult to involve individual patients at the planningstage, though a patient consultant could be askedto comment on the proposal.

It is important to understand that in English the term‘representative’ can be used in two ways: someonewho is chosen to represent others, or someone who istypical of a particular group of people. It is essential to beclear what kind of patient is needed. Is it a representativewho will put forward the views of a group (e.g., witha specific condition or disease)? Or is it someone whois typical of a group but who will only speak about thecondition or disease from his/her own position or setof views?

If your project wants a patient who puts forward viewson behalf of a group, you should ensure that the personor organisation has a communication structure that willsupport the work you want. This person will then act asa representative of the patient organisation and of thepatients that organisation represents.

The queries received by a patient organisation usuallyprovide its representatives with a good overview ofthe issues that affect patients with a certain condition.A patient organisation also usually has an appropriatestructure to spread relevant project information backout to grassroots patients.

If you want a patient who puts forward views basedon their own experiences, you should ensure thatexperience is relevant to your task. Individual patientshave deeper knowledge of their own condition, but maynot always understand how the same condition affectsother patients whose personal circumstances andbackground are different, or who are at a different stageof the condition.

If patient organisations become involved, they may carryout the project by using only workers from their ownorganisation but they may also involve grassrootspatients for some project tasks, on a paid or voluntarybasis. These possibilities should be discussed at theplanning stage. Good practice in representing patientsis discussed in the Value+ Toolkit Section 2.4.1.

To ensure an appropriate mix of women and menamong the patients and patient representatives inthe project, project co-ordinators need to be aware ofany official rules and regulations governing gender inEuropean projects, how to apply these, and where toget access to any help or advice that they might needto understand and apply these.

Different European health-related projects often focuson a particular condition or disease. The conditionscovered by the projects that the Value+ team investigatedincluded: asthma, autism, cancer, cystic fibrosis,dementia, diabetes, eating disorders, headache,mental health conditions, migraine, multiple sclerosis,neuromuscular disorders, Parkinson’s disease, and rareeye diseases. Projects also focused on genetic testingand pharmacogenetics.

Patient organisations throughout Europe can be foundby searching the European Patients’ Forum’s Directoryof European and National Patient Organisations atwww.eu-patient.eu/projects/valueplus/directory

Other sources of useful information about patientorganisations can be obtained from organisations such as:health authorities, hospitals, clinics, and palliative careinstitutions/hospices, foundations/charitable bodies,research institutions and universities, and specificindustrial companies or industry coalitions.

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6.2 WORKING WITH PATIENTS AND PATIENTORGANISATIONS IN A PROJECT

6.2.1 What supports patients to be involved inprojects and what can incentivise them?

The answers to this question may seem to refer more toindividual patients than to patient organisations. It isimportant to remember that individual patients are partof the membership of patient organisations, and electthe Board Members who make the decisions about theirorganisation. Members may well take part directly inimportant decisions, such as whether to form or joina project consortium in preparing a project proposal.This is part of the cultural difference between patientorganisations and other partners.

There are several aspects of patient involvementthat may affect the decision of patients or patientorganisations to become involved. They include:

• Reducing the marginalisation that could relate totheir condition or the group of patients to which theybelong

• Being able to represent their patient group • Personal contact and other support for involvement

within the project• Being kept up-to-date on treatments and research

relating to the condition.

Patients may see patient involvement in a project asa means of reducing some form of marginalisation orstigma. Their motivations in getting involved in a health-related project can range from: improving healthcare,treatments and the way they are delivered, to reducinginequalities in treatments that are available. They placevalue on the subjective experience of the patient who islikely to understand the patterns and experience ofhis/her own condition best, and has experience ofcoping with the condition, or even with multipleconditions. Patient organisations have an importantrole in communicating this expertise and making policymakers and health professionals more sensitive tothe needs of patient groups including those whoare marginalised. This is a significant factor in theirmotivation to take part in projects.

Previous contacts with other organisations so thatsomething is known about them when a project issuggested, are important to patient organisations.

Individual patients want to have a contact person toliaise with them, and to give feedback and support.For a project co-ordinator, your patient organisationpartner may be the most appropriate candidate forthis role, if this is geographically possible. The patientorganisation should be asked to set aside an identifiedcontact person for this role, which would include regularcontact meetings with patients. This is fully described inthe Value+ Toolkit sub-section 3.5.4. Sometimes groupsessions with their patients could also be useful.Any patient organisation contact person probably alsoneeds to have a designated person with whom they inturn can liaise, and who is located inside the project’sco-ordination or management team.

If the project does not have a patient organisationpartner, someone in the project’s co-ordination ormanagement team must take on the role of managingthe involved patients. Recognising patients’ other timecommitments, and planning the timescale of the projects,to allow for these commitments is an important matterthat needs to be planned into the structure of a project.

It is also important to provide sufficient resources forpatient involvement in terms of payment, expenses,training, and patient-friendly information. Making apayment for work done, as well as for expenses incurred,can make it possible for more patients to be involved.

Project co-ordinators with whom Value+ workedrecognised that good communication competenciesare necessary for project managers. They suggestedthat the project documents should be translated into thelanguage of each participant, because it is much easierto involve patients, or get them to comment on projectresults, if they receive the information in their ownlanguage.

It is always important to keep patients up-to-date andinformed. Many of the patients whom Value+ interviewedfelt that they had not been kept in the loop, and theyhad not understood the full picture of the project nor whatit had gone on to achieve. As a project co-ordinator, it isgood practice to ensure that any patient who participatesin a project is kept informed about the project’s newsand developments. A means of collecting and sharinginformation on an ongoing basis with the patientorganisation (and in turn with its patients) should beexplored.

“Community organisations understand better the needsof the ‘in between’ people: people who are seeking

treatment, trying to find alternatives to treatments, or whoare disillusioned with current treatment options”.

Project co-ordinator interviewed by Value+

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Acknowledging patients’ work and its impact in anyproject reports, in publications, and at project events,is essential.

Projects working to the Value+ Model will ensure thatpatient organisations work with prospective projectpartners to:

• Take part in developing and costing the detailedplans for these (i.e. those involving patients projectactivities), taking into account the requirements oftheir patients, for example, information in differentlanguage or formats, needing someone toaccompany them to meetings

• Develop a strategy for communication betweenpartners, and a strategy for supporting patientinvolvement

• Develop a strategy for monitoring and evaluatingboth the project itself, and patient involvement withinthe project.

The partners’ strategy for supporting patientinvolvement should cover:

• The production of project information and projectresults in a patient-friendly format

• The recruitment and induction of grassroots patients• Support and training for specific project tasks• The patient organisation’s support and mentoring for

grassroots patients • How to ensure continuity, if an individual patient has

to drop out• Acknowledgement of the contribution that patient

involvement has made to the project• The provision of information to patient organisation

and grassroots patients after their involvement in theproject has ended about the impact of the projectresults once the project ends.

6.2.2 Ethical issues that are important for patients

Value+ focus groups identified that ethical issues canbe a challenge in projects. Making an application forethical permission can be a complicated procedure.Ethical permission procedures are often aimed at healthprofessionals who work with patients on their treatmentand care, as in clinical trials. These are all issues aboutwhich health professionals should be informed andcompetent.

These procedures are often not designed for organisationsthat want to work with groups of patients or individualpatients, with no clinical input into a person’s treatmentor care. The kinds of ethical issues that patients areconcerned about are often not covered by official ethicalpermissions. Rather, patient organisations develop theirown ethical checks, for example, when they are askedfor assistance to recruit patients. In the toolkit,an example of a set of ethical checks designedby Asthma UK is included.

Especially when patients are involved in projects, anumber of general ethical issues also need to be bornein mind. Patient organisations or patients may be moreconcerned about the ethics that relate to dignity,fairness, equity, and justice. Examples can includeattributing tasks, funding, and selection of patients.

Patients may also be very aware and sensitive to issuesthat relate to their privacy and confidentiality, safety,security, and consent.


Patients have told Value+ that these kindsof issues are of concern to them

Partnership and equality: Both patients andproject co-ordinators considered these to be thecore of good practice in patient involvement.Payment of individual patients for their involvementtasks is an equality issue.

Attribution of tasks: It is worthwhile paying attentionto how to distribute tasks to different patients.Task should also be correctly remunerated.

Equity: It is crucial to avoid any type ofdiscrimination in patient participation (examplescan include race, religion, age, disability, gender).

Funding: Choosing appropriate funding sources,and ensuring transparency and independence inrelation to those sources.

Selection of patients: Representatives shouldreally represent patients.

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Some health professionals may resist patient involvementin projects. One reason that they may do this, it hasbeen suggested, is that they are confused about how toapply their own organisations’ or occupations’ ethicalcodes to patients who become their work colleagues,rather than people whom they treat. Some patientsmay be playing dual roles i.e., acting as both a workcolleague and a patient, and both the patient and thehealth professionals may have to learn to handle this.Part of managing the health professional-patient or thepatient-health professional relationship is about beingreally clear where micro-level personal healthcare stopsand more macro-level patient involvement begins.

6.2.3 Patients’ social and medical contexts

It is important to know about and understand thedifferent social environments and medical conditionsof patients involved in projects. This observation ismeant in both an intellectual sense and also in terms oforganising the research to benefit most effectively frompatients’ strong points. This should be framed with thedignity, respect and rights of the patients in mind. It shouldrespect the relevant legal and policy instruments, andgood practice with regard to ethics and confidentiality.

On the social side, it is also important to be awareof the differences between patients themselves andthe needs of others. Other people associated with theinvolvement of patients may include: family members,carers, and advocates (e.g., people employed toadvocate with persons who have a disability ora mental health condition).

On the medical side, it is important to know broadlyabout an individual patient’s medical environment soas to understand what the person can do insidethe project. Included here is the need to be aware ofthe issues connected with a particular condition,the availability of a specific patient, his/her capacitiesor skills, and his/her transportation needs.

For information about medical conditions, see Annex 3of this handbook.

6.3 THE SUSTAINABILITY OF PATIENTINVOLVEMENT THROUGHOUT A PROJECT

European projects in health-related areas that aim toinvolve patients may face a number of challenges,particularly with regard to capacity and capacity-building.

The Value+ project has hoped to ensure that patientsand patient organisations are involved throughout theduration of any given EC co-funded health-related project.

The different stages that are evident in the life of aproject are numerous. In sub-section 5.3 of thishandbook, it can be seen that the stages that comeprior to the actual start of a project include: proposaldrafting and submission, an evaluation process, and anegotiation meeting. Once a project has started, thestages constitute a project start or ‘launch’ – which isoften a meeting in its own right, the day-to-day runningof the project, project reviews, dissemination of a project’sactivities, work, and outcomes, and the project end.

It is absolutely possible and indeed desirableto involve patient organisations in all these stages.The Value+ Model covers all these stages, as well asevaluating the impact of the project after it has ended.Patient organisations may prioritise involvement in theactual proposal formulation and design, assuringthemselves that the planned involvement is adequatelyresourced and that project outcomes are geared closelyto patient needs and can feed effectively into policy.Patient organisations also have particular skills forcommunication with grassroots patients, ensuring thatthe documentation, publications and ideas that are togo out to patients can be easily understood by thosepatients, and are worded appropriately.

Various capacity challenges may be faced by patientorganisations, and indeed other partners, at each stageof a project. One common challenge throughout thelifetime of any project is the patient organisation’s ownongoing funding; few if any patient organisations receiveguaranteed funding from national or local governmentand so they depend on their own fundraising efforts.As staffing is often the largest part of a patientorganisation’s budget, a temporary funding gap couldmean that workers with valuable experience andexpertise are lost to the organisation.

Financial challenges during a project could especiallyhit at such stages as: potential overspending of anybudget at the start of a project when EC co-fundingmight be received en bloc. Another sensitive period maybe towards the project end, when such a project partnermay find it difficult to finance its activities. A patientorganisation may find it difficult to ask for attendanceand activity throughout the whole project from patientswho are volunteers, quite apart from issues relating tothe stage and severity of any condition they might beexperiencing. Many mechanisms on how to deal withsuch situations are outlined in the toolkit.

6.3.1 Financing and resourcing patient involvement

Good quality patient involvement requires funding.A lack of funding may limit the degree of patientinvolvement. Involving patients and patient organisationswell takes time and resources. When project partnershave a commitment to patient involvement, they needto allow for these issues in the project planning.Involvement on the part of patients is often a voluntaryactivity rather than a full-time job, although in general,payment should be budgeted for long-term time-intensive tasks. Patients may need longer than otherpeople who are working in a project to fit in a particulartask. This can be because of their paid employmentcommitments, treatment schedules, or other personalcircumstances. Appropriate time should also be madeavailable when patient representatives need to organisetwo-way communication with grassroots patientsto complete a task. This is especially so whengrassroots patients do not use email, for example.Daytime meetings can also be difficult for patientswho are working.

It is important for project co-ordinators to have a soundsense of the number of financial challenges that mayface them, their projects, and their patient partners,even at the stage of preparing a project proposal.

Today, many patient organisations see European projecteligibility criteria as very complex. Project co-ordinatorsmight think carefully therefore about how some level ofwaiving of co-financing procedures and simplificationof application procedures might be beneficial to patientorganisations, and how patient organisations mightbenefit from greater access to funds at both Europeanand national levels. Patient organisations might alsobenefit from having specific contact points or persons,Evidently, these are also highly appropriate considerationsfor EC and European agencies’ officials.

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Annexes

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ANNEX 1 - READING MATERIALS

This annex contains some useful reading materials thatrelate to the main topics covered by meaningful patientinvolvement in projects. The materials are in differentlanguages, not simply in English.

PATIENT INVOLVEMENT

Publications

Arstein, SR (1971) A ladder of citizen participation.Journal of the Royal Town Planning Institute: 2-6

Bagott, R; Forster, R. Health consumer and patients’organizations in Europe: towards a comparativeanalysis. Health Expectations:11:85-94

Bericht des Ausschusses für Bildung, Forschung undTechnikfolgenabschätzung (18. Ausschuss) gemäß §56a der Geschäftsordnung Technikfolgenabschätzung(TA) Zukunftsreport Individualisierte Medizin undGesundheitssystem. Bundestagsdrucksache 16/12000,dated Feb-ruary 17th, 2009

COM(2008) 414 final 2008/0142 (COD) Proposal for aDirective of the European Parliament and of the Councilon the application of patients' rights in cross-borderhealthcare

Coulter A, Parsons S, Askham J (2008) Where are thepatients in decision-making about their own care?policy brief written for the WHO European MinisterialConference on Health Systems, 25-27 June 2008,Tallinn, Estonia

De Gooijer W (2007) Trends in EU Healthcare SystemsNew York: Springer

Directive 2006/123/EC (2006) Directive on services inthe internal market http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2006:376:0036:0068:EN:PDFSee L376/36 Official Journal of the European Union.27.12.2006

European Council (2006). Council Conclusions onCommon values and principles in European UnionHealth Systems. Brussels, European Publications Office.C 146: 1-3

Goodrich J and Cornwell J (2008) Seeing the Person inthe Patient: The Point of Care review paper. London:The King’s Fund ISBN 978 1 85717 577 6

Hart D (2004) Patients’ rights and patients’ participationindividual and collective involvement: partnership andparticipation in health law. European Journal of HealthLaw,11:17-28

Hofmarcher MM and Rack HM (2006) Austria:Health System Review, Health Systems in Transition8(3): 1-247, edited by Riesberg A, EuropeanObservatory on Health Systems and Policies

Leys M, Reyntens S, Gobert M (2007) La participationdes patients dans la politique des soins de santé: revuede la littérature et des initiatives internationales etbelges. Bruxelles: Fondation Roi BaudouinISBN-13:978-2-87212-526-5 www.kbs-frb.be

Naidith, N. Patient organizations and public health.European Journal of Public Health 17(6):543-545Richards, T (1999) BMJ. 318:1234 (May 8, 1999)www.bmj.com/cgi/content/extract/318/7193/1234/b

Tritter J, Koivusalo M, Ollila E, Dorfman P (2009)Globalisation, Markets and Healthcare Policy. Redrawingthe Patient as Consumer. London: Routledge

WHO (1999) Patients' Rights and Citizens' Empowerment:through Visions to Reality Joint consultation betweenthe WHO Regional Office for Europe, the Nordic Councilof Ministers and the Nordic School of Public HealthCopenhagen, Denmark 22-23 April 1999

Websites

Shaping our Lives, national user network(United Kingdom) www.shapingourlives.org.uk/

“Your guide to the NHS. Getting the most out from yourNational Health Service” (2001)www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4007349

International Alliance of Patients’ Organizations,Guidelines on Patient Involvementwww.patientsorganizations.org/attach.pl/591/184/IAPO%20Guidelines%20for%20Patient%20Involvement.pdf

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Involve is an England Department of Health-fundednational advisory group for public and patient involvementin England’s national health service. It has usefulguidelines for funders and researchers, including:

• Good practice in active public involvement in research• A Guide to Actively Involving Young People in

Research: for researchers, research commissioners,and managers

• Peer reviewing research proposals: guidelines formembers of the public. A series of seven guidelinesto help commissioners, researchers and the publicto think about public involvement in researchcommissioning.

www.invo.org.uk/

USER RESEARCHERS

User researchers or survivors, and health professionals,have all written chapters in this book which waspublished in 2009:

Wallcraft J, Schrank B, and Amering M. (2009)Handbook of Service User Involvement in MentalHealth Research. Chichester, UK: Wiley-BlackwellISBN 978-0-470-99795-6.

This 2009 book was written entirely by userresearchers or survivors:Sweeney A, Beresford P, Faulkner A, Nettle M,and Rose D (2009) This is Survivor Research.Hay-on-Wye, UK: PCCS BooksISBN 978-1-906254-14-8

GENDER IN RELATION TO HEALTH

Here is a list of books and articles published over thepast decade which are relevant to the notion of genderin health-related projects:

Branney, P, White, AK (2008) Big boys don’t cry:men and depression. Advances in Psychiatric Treatment14: 256–262

European Commission (2006) Directorate-General forResearch, Biotechnology, Agriculture and Food, TalkingLife Sciences To Both Sexes, A Workshop on ResearchCommunication and Gender, Conference Report,9 February 2006

Geusens, P and Dinant, G (2007) Integrating a genderdimension into osteoporosis and fracture risk research.Gender Medicine 4 (supp B) S147-161

Klinge, I (2008) Gender perspectives in EuropeanResearch. Pharmacological Researchdoi:10.1016/j.phrs.2008.08.011

Lesley L (2008) Women's interpretation of cardiacsymptoms. European Journal of Cardiovascular Nursing7(3): 161-162

Oliffe J and Mro´ z L (2005) Men interviewing men abouthealth and illness: ten lessons learned; Journal of Men’sHealth Vol. 2, No. 2, pp. 257–260, June 2005

Sen, H and Östlin, P (eds) (2009) Gender Equity inHealth. The Shifting Frontiers of Evidence and Action.Routledge ISBN: 978-0-415-80190-4

Vidal C, (2006) Neurobiologist, Institut Pasteur, Paris,France, ‘Brain, sex and ideology’ in Talking Life to bothSexes, European Commission conference report,sec 1:9, February 2006

Wizemann T.M. and Pardue M-L. (2001) Exploring thebiological contributions to human health: does sexmatter? Washington, D.C.: Institute of Medicine.

Annexes

ANNEX 2 – EXAMPLES OF GOOD PRACTICE

This annex provides a brief description of projects withexamples of good practice that were selected by theValue+ project team.

Illustrations and pull quotes from these projects havebeen used as examples particularly in the toolkit butalso in this handbook.

The range of projects used demonstrates the widevariety of activities in which patients and patientorganisations can become involved.

All these projects were supported by EC co-funding,unless the description states otherwise. The projects arecategorised under broad activities that projects that arehealth-related might be inclined to undertake.

PROJECTS WHICH INVOLVED INDIVIDUALPATIENTS

• The Alladin project developed technology for use inneurorehabilitiation, particularly with stroke patients,to assess and support functional recovery.Patients were given a small number of sessionswith a machine which presented them with a virtualscenario and asked them to try to do a simple task,for example, to lift something they could see on ascreen in front of them. As they tried, patients couldthen see their arm move on the screen in front ofthem, even though physically they had little or nomovement. Patients reported that using the machinemotivated them to persist with their rehabilitation.www.alladin-ehealth.org/

• The Migraine and Chronic Daily HeadacheManagement - The Patients' Perspective projectdeveloped training for patients, focusing on copingstrategies and relaxation techniques. This projectalso trained patients to become trainers, so that thetechniques could be widely spread by trainers whoreally understood the problems.

• The ongoing Remine project is an IT-based project,aimed at identifying potential risks to individualpatients when they are hospitalised. Risks are notalways recognised because the patient’s healthrecords are not always quickly available, and it isdifficult to extract all the relevant information fromthem. The Remine project had no patient organisationpartners, and wanted any information about howto involve patients better in the ethical decision ofallowing their records to be analysed before thepoint when they might be in immediate need ofhospital care.

We considered their commitment to learn aboutpatient involvement as the first step to good practicein involving patients. The patient group in which theywere interested were elderly patients, some of whomwould not have the capacity to understand theconsent procedure www.remine-project.eu/

The Value+ team suggests that when individualpatients lacked mental capacity, the project couldwork with any relatives, carers, care workers, patientadvocates or other independent organisations whichprovided information or services to the target patientgroup. This would mean involving representativesrather than patients, as patient involvement itself wasnot possible. Alzheimer Europe’s website providesinformation about the law on mental capacity. www.alzheimer-europe.org/

• The ongoing SWEET project is developing centresof reference for the treatment of children andadolescents with diabetes. It is also developingchild-friendly information, and planning to holda focus group with children who have diabetes.http://sweet-project.eu/html/en/index_html

• The GENDEP-ELSI project involved researcherswho were also patients, through the Service UserResearch Enterprise at the Institute of Psychiatry,Kings College, London. The study looked at theethical and social implications of the GENDEPclinical trial with pharmaceuticals for depressionwhich are adapted to an individual’s genetic make-up. The study held focus groups with patient whohad taken part in the trial, to explore their views andcheck whether patients had understood the consentform for the clinical trial.www.iop.kcl.ac.uk/projects/?id=10192

• The Comoestas project aims to develop aninnovative computerised system that allows patientswith Medication Overuse Headache to receivecontinuous and personalised treatment. The systemwill be based on an advanced Alerting and DecisionSupport System that follows patients from thediagnosis and supports the physician in managingthe therapy and controlling relevant events impactingon patient safety. The project involved patients indeveloping a questionnaire for a study aimed atassessing patients’ need and preference aboutdifferent source of information and expectationsof headache treatment.www.comoestas-project.eu

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PROJECTS WITH PATIENT ORGANISATIONSAS PARTNERS

• The Edupark project aimed to improve the quality oflife of people with Parkinson’s disease, by organisingsessions where patients shared and improved theircoping strategies. Patient organisations helped toshape the design of the sessions, and participantfeedback also contributed to the session design.Patients reported that meeting others with the samecondition, and learning from each other, was verymotivating. Patient organisations helped to publicisethe project results to grassroots patients.

• The ongoing Translational Research in Europe -Assessment and Treatment of NeuromuscularDiseases (TREAT-NMD) project is a network of21 partners in 11 countries. It aims to establish bestpractice in the diagnosis and care of neuromusculardisease patients, and to promote research into newtreatments for these rare disorders.Patient organisations started the project,provided part of the funding, and are leading it. www.treat-nmd.eu/home.php

• Co-operation between research cliniciansand a patient association, Mukoviszidose e.V.Bundesverband Selbsthilfe bei CF in a pilot studyledon to the ongoing European centres of referencenetwork for cystic fibrosis project (ECORN-CF).This project provides expert advice on cystic fibrosisto patients, doctors and carers all over Europe sothat it is the expertise which travels, not the patient.This project’s work is already being used as a modelfor the transfer of knowledge and expertise on rarediseases in EU Member States. The project willproduce information in eight languages.http://ecorn-cf.eu/

• The ongoing European Union Network for PatientSafety (EUNetPas) project aims to improveco-operation between European member states todevelop patient safety programmes, provide rapidresponse to health threats, prevent medication error,produce guides and competencies for healthprofessionals, and share expertise to develop asustainable network for patient safety in the EU.http://90plan.ovh.net/~extranetn/

• The ongoing European network on endometriosis(ENE) project seeks to raise understanding andpromote awareness of the impact of endometriosisacross the EU, and to create an internationalnetwork of expertise and opportunities for allprofessionals and individuals dealing withthe disease. Information and support will be aimedat individuals, researchers and academics,health professionals, and employers.www.endonetwork.eu/

• The Mental Health Europe project ‘Good Practicesfor Combating Social Exclusion of People withMental Health Problems’ included mental healthorganisations from 10 Member States. The projectpartners analysed the situation of social exclusion ofpeople with mental health problems in each of thepartner countries, and identified local examplesof good practice working towards social inclusion.Some of these examples are included in Section3.5.2. Patients themselves were consulted asexperts and chose the best practice examples.This information is available on a website,www.mentalhealth-socialinclusion.org/home.htmlThe Slovenian website for support with depression,reported by this project, is www.nebojse.si

Information gathered during this project led to furtherlocal and national initiatives. Mental Health Europehas received core funding and recognition as a keynetwork involved in the fight against social exclusionof people with mental health problems.

• The Salut project developed Internet-based systemsto improve diagnosis and services for eatingdisorders. Internet-based therapy is now availableand in use. Patients and patient organisationsvalidated an online self help guide for bulimia whichwas developed during the project; the informationis available in English, French, and Spanish.See www.salut-ed.org/

• The SEEM II project addressed health and socialservices for elders from ethnic minorities; they werenot patients with a specific condition. The Value+team included it because it was the only project wediscovered which specifically addressed diversityissues in health and social care. In Romania, theproject’s aim was to develop training programmesfor young Rroma women to give them the skills,experience and knowledge needed to work in thehealth and social care sector. This would serve themajor goal of improving access to those services forthe Rroma community and voicing the needs andconcerns of the Rroma as a whole and Rromaelders in particular.

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Annexes

PROJECTS LED BY PATIENT ORGANISATIONS

• “Our organisation – APOZ - Bulgarian CancerAssociation and friends – was approached by thegovernment and Ministry of Health because theyhad no idea what number of people needed whatlevel of treatment (early stages to advanced).We initiated research to help find this out butreceived no payment at all; it was all done ona voluntary basis. It was a big success and thegovernment understood that they needed toincrease financial support. The budget increasedby 30% so the situation got better as a result ofthis work on statistics”.

• The EU Primary Immunodeficiency ConsensusConference project, lead by the International PatientOrganisation for Primary Immunodeficiencies (IPOPI),aimed to provide a public health model for dealingwith primary immunodeficiency disorders in the EU.The information produced by the project waspresented at the conference, and translated into10 languages. www.ipopi.org

• The European Federation of Allergy and AirwaysDiseases Patient Associations (EFA) gatheredinformation, using their member associations andconsultants in different countries, about the quality ofindoor air quality. Air pollution is a big factor in someallergies and airways diseases, and many peoplespend most of their time indoors. Their project‘Towards Healthy Air in Dwellings in Europe’ maderecommendations that would decrease this airpollution.www.efanet.org/activities/documents/THADE.pdf

• In 1997-2000, Alzheimer Europe’s Lawnet projectcollected all legislation relating to the rights andprotection of people with dementia in the EuropeanUnion. The results were used in two ways; the firstwas to inform people with dementia and their carersabout their rights. The results were also used as ameans to improve the legal rights and protection ofpeople with dementia by using them as an evidencebase to draft legal recommendations. The legalrights tab on Alzheimer Europe’s homepagewww.alzheimer-europe.org/ gives access to reportsof the legal status in each country.

• The Lithuanian Multiple Sclerosis Society (LISS)worked with the Danish Multiple Sclerosis Society onthe Challenging Multiple Sclerosis project,adjusting the most effective Danish models andexperiences to Lithuania and helping to prepare aLithuanian strategy of providing help for people withmultiple sclerosis. The project held events to raisepublic awareness, and an annual conference forpatients and professionals together. Anotheroutcome of the project was the increased contactwith other patient organisations for multiple sclerosisin other Baltic States, leading to a strong patientlobbying group in this region.www.liss.lt/index.php/pageid/574

• The ongoing Swedish Rheumatism Association,the Swedish Asthma and Allergy Association,the Swedish Heart and Lung Association and theSwedish Psoriasis Association have come togetherin the Forskningspartner (research partner) project,which is not supported by EC funding. They aretraining patients to join research projects as patientresearchers.www.forskningspartner.se/start.asp?sida=5590

• The Multiple Sclerosis – the Information Dividend(MS-ID) project aimed to improve access totreatment and quality of treatment for all citizensaffected by multiple sclerosis. The project reviewedmethods of social support as well as good practicein diagnosis, treatment, and management.The project was led by the European MultipleSclerosis Platform, which is now lobbying foraction on their recommendations. These include aEuropean Code of Good Practice. www.emsp.org

• The Establishment of a network of Specialisedcentres for children and young people within ASDAutistic Spectrum Disorders project was initiatedby the Bulgarian Association Autism to developservices to meet the needs of patients with autism.The patient organisation developed patient/familyfriendly leaflets and website content.Although involving patients themselves was noteasy, the project noticed that the patients’ skillsand confidence increased through their work onthe project, and their relationships with healthprofessionals appeared to improve.

• The Eurogenguide project has gathered informationabout genetic testing, counselling and researchacross Europe, involving patient organisations andreaching grassroots patients through an onlinesurvey. This information is now on their projectwebsite, www.eurogenguide.org.uk/

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• The Asthma School project was started by anorganisation of mothers of children with asthmafrom the Abba Association. They developed trainingsessions which are delivered by mothers themselves,and published a booklet which has a chapter on‘Children with Asthma’. “Our experience shows thatpublishing of this kind of teaching materials includingthe knowledge of both professionals and patients isextremely useful, because it includes the experienceof the parents and patients shared in a very easy tounderstand manner and supported by the professionaland scientific explanation of the medical experts”.

• The Proretina SND project was started up bypatients, who also led the project. Selfhelp groupswere set up for patients with eight rare retinaldegeneration conditions. Focusing at first onsupporting each other and sharing coping skills,the patients involved then identified other topics onwhich they wished to work; these related to healthcare, information for patients, and research.They developed a description of the conditions, anda structured file to support patients’ communicationwith their doctors about their diagnosis andtreatment. They also developed a training film fordoctors to show them how the patients’ self-advocacy and self-help could support bettercommunication with doctors, and better self-management of the condition. www.pro-retina.de/

ANNEX 3 - WHERE TO FIND OUT MOREABOUT PATIENT ORGANISATIONS, PATIENTS’ CONDITIONS, AND PATIENTS’ RIGHTS

This annex contains country-specific informationcovering all the Member States in the European Union.It is not however fully comprehensive.

There are web links to sources where to find lists ofpatient organisations, people or organisations withpatient involvement experience, descriptions of patients’conditions and legislation or regulation on patients’rights in individual European countries.

Patient organisations

EPF has developed a directory of European and nationalpatient organisations. Most of them are disease-specificwhile some address broader issues related to patients.The directory can be accessed atwww.eu-patient.eu/projects/valueplus/directory

Value+ developed a database of all the projectsthat were the object of its assessment on patientinvolvement in EC health-related projects. All theprojects were included although it was not possibleto assess precisely if and how they involved patientsand patient organisations. Value+ thought it would beuseful to include them all in case the readers wantto do further research on any of them.The database is at www.eu-patient.eu/projects/valueplus/database

Patients’ conditions

Details with regard to the specific conditions anddiseases that patients who are involved in a project areexperiencing could be useful information for projectco-ordinators. A useful link is England’s NHS Directwhich has a “Health A-Z”. For every letter of thealphabet, it gives succinct information on the symptomsof many different conditions and diseases (in somecases, there may be up to one hundred conditionsper letter of the alphabet)www.nhs.uk/Conditions/Pages/bodymap.aspx?r=1&rtitle=Health+Encyclopaedia

Patients’ rights in the EU

EPF compiled an overview of patients’ rights in theEuropean Union. It describes the specific legislativeframework in each Member State: www.eu-patient.eu/projects/valueplus/resources/attached_documents/overview-of-patients-rights-in-the-member-states.pdf

Further sources are:

http://europatientrights.eu/about_us.html

The European Charter of Patients' Rights by the ActiveCitizenship Network:www.activecitizenship.net/content/blogcategory/32/77/

‘The patients’ charter and you a charter for England’(1991): www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4006022

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Annexes

ANNEX 4 - VALUE+ TOOLS

VALUE+ INDICATORS FOR MEANINGFULPATIENT INVOLVEMENT

Involvement in planning and decision making

1. Patients/Patient organisations helped to identifythe topic addressed by the project

2. Patients/patient organisations helped to shapethe project design

3. Meaningful patient involvement and its monitoringand evaluation during the project were part of theproject design

4. The patients/patient organisations involvedrepresented the type of patients who would beaffected by the project outcomes.

Co-operative working with all partners

5. Project partners understood and supported patientinvolvement in the project

6. The patients/patient organisations were involved inthe project Steering Group and felt they had aninfluence on the decisions made

7. The patients/patient organisations involved in theproject Steering Group had two-way communicationchannels with grassroots patients, that enabledthem to pass on information and receive feedback

8. Activities were carried out that would not have beenpossible without patients/patient organisationstaking roles in the implementation of the project.

Support for involvement

9. Involvement was possible in a number of ways, andtraining or coaching was available for some aspectsof involvement

10. Sufficient resources were available to support the workdone by the patient organisations, other patientrepresentatives and individual patients. The budgetincluded patient expenses, and the costs of appropriatecommunication with grassroots patients

11. There was some continuity of involvement throughall stages of the project, that is, the same patientsor patient organisations contributed to planningand carrying out the project. Patient organisationsprovided support for grassroots patients and wereable to ensure good handovers if patientrepresentatives changed

12. Patients who had chosen to be involved in a ‘one-off’ activity were kept informed, in an appropriateway, of the project progress and about the projectresults and their impact after the project ended.

Monitoring and evaluation of patient involvement

13. The experience of patient involvement in this projecthas been positive for the patient organisation,individual grassroots patients, and other projectpartners

14. Adjustments could be made during the projectbecause of the ongoing monitoring of patientinvolvement.

Evaluation of the project’s results and impact

15. Results were obtained that would not have beenpossible without patient involvement; this wasacknowledged in the project report

16. The experience of patient involvement in this projecthas strengthened the patient organisation’s skillsand/or improved its services to grassroots patients

17. The project outcomes can have a positive impact ongrassroots patients, whether they were involved inthe project or not.

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Annexes

Indicator Met Partly met Not met(2) (1) (0)

Patients/patient representatives’ involvement at the beginning and throughout the project in planningand decision making

Patient organisations identified the project topic, or those aspects ofthe topic of most interest to their patients

All project partners were involved in identifying what the specialcontribution of patients should be, and how and where the patientorganisations or grassroots patients could most effectively be involved

The patients or patient organisations involved represented the type ofpatients who would be affected by the project outcomes, taking intoaccount gender, ethnicity, age, etc.

Meaningful patient involvement and its monitoring and evaluationduring the project were part of the project design

Patients or patient organisations took part in developing and costingthe detailed plans for project activities where patients would beinvolved, taking into account patients’ special requirements, forexample, information in different language or formats, needingsomeone to accompany them to meetings

The project plan included a strategy for communication betweenpartners, and a strategy for supporting patient involvement

Maximum Score: 12 Total:

Co-operative working between patients/patient organisations and other partners, supported by a clearunderstanding of each other’s roles

There was an induction and training for all partners about the otherpartners, their roles and special expertise

There was induction and training about the communication methodswhich would support both patient involvement and communicationwithin the project

There was an agreement about how each partner would fully participatein project decisions, about what should be presented at full projectmeetings, and which topics were better suited to specialised subgroups

There were opportunities to build working relationships through formaland informal activities


ASSESSMENT GRID OF THE VALUE+ MODEL OF MEANINGFUL PATIENT INVOLVEMENT IN PROJECTS

Scoring the Grid

Met means that the indicator has been met in full

Partly met means that some effort was made to meet the indicator, but that it was not met in full

Not met means that the project did not try to address the topic of the indicator

Please note that the model requires support for patient involvement to be planned into the project design.Much of the support for patient involvement is therefore assessed under that heading.

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Providing information and support for involvement, including clear communication aboutthe project itself

There were resources for the recruitment, induction, support andexpenses of grassroots patients, as well as training for specificproject tasks

The project plan allowed adequate time and resources for appropriatecommunication with grassroots patients

Patient organisations provided mentoring for individual patients,and ensured continuity if a patient had to leave the project

Grassroots patients were kept informed about the project after theirinvolvement in the project had ended, and about the impact of theproject results after the project was over

The contribution made by patient involvement to the project wasacknowledged with appropriate detail in the project results


Monitoring and evaluation of patient involvement from the perspective of all the partners

There was a check on how representative the involved patients were,in terms of age, gender, disability, ethnicity, sexuality etc. of the patientgroups who would be affected by the project outcomes. If it was notpossible to involve a particular group, the reasons were recorded

Perspectives about patient involvement in the project were obtainedfrom all project partners, not just patients or patient organisations

It was possible to identify the specific contribution made bythe patient organisations and grassroots patients

Adjustments could be made during the project because ofthe ongoing monitoring of patient involvement


Evaluation of the project’s results and impact, identifying how patient involvement has enhancedthe results

The evaluation described how patient involvement shaped the project,and achieved more than a similar project without patient involvementcould have done

The evaluation recorded the reasons for not involving the patientorganisation or grassroots patients in particular tasks or work areas

The evaluation recorded the reasons for including a patientrepresentative rather than a patient, and for not including patientswho were representative of a particular patient group

The evaluation included the impact of the involvement on the patientorganisations, and on the other partners

The evaluation identified the impact of the project results onhealth policy


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Annexes


Planning and decision making

Co-operative working

Support for Involvement

Evaluation of Involvement

Evaluation of Project

Maximum Score: 48 Your score:

You might find useful to reflect on your score by looking at the table Value+ Levels of Patient Involvementin Projects on the next page.

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Value+ Levels of Patient Involvement in Projects

TYPE OF INVOLVEMENT

CONSULTATIVE

• Patients are involved inresearch or project stages byconsultation, (for exampleevaluating a proposal, orcommenting on the designfor a questionnaire)

• Patients are not involved incarrying out the project.

PARTICIPATORY

• Project or research donewith patients taking roles incarrying out the project

• Patient organisations maybe project partners

• Involvement possible at allstages, including projectdesign.

PATIENT-CONTROLLED

Project actively controlled,managed and directed bypatients/patient organisations.

VALUES AND ATTITUDES

• Valid outcomes soughtaccording to scientificmethods

• Personal experience maybe seen as irrelevant toscientific study, and possiblylowering the quality ofresearch.

• Patients contribute morethan just being 'subjects'

• Recognition of the patient's-holistic experience and itsvalue in research

• Emphasis on process aswell as outcomes.

• Commitment to addressingmarginalisation

• Commitment toempowerment throughproject participation andoutput

• Project outcomes shouldlead to action/change.

ADVANTAGES

• For project teams:QuickLess costlyValidation of results.

• For patients:Preferred by some patientsCan raise awareness ofhealth and research issues.

• For project teams:Patient experience caninform the project designPatient researchers can getdifferent, qualitativeinformation from patientsValidation of resultsWider dissemination ofresults, particularly to patientsAdditional lobbying powerfor policy changeImproved relationships withpatients and families.

• For patients:A positive aspect to thecondition they are managingSeen in a more capable roleby their care teamsOpportunity to learn new skillsPossibility of change andideas into actionPatient-friendly informationon project results.

• For project teams:as for participatory projectsand researchValidation of project/research design.

• For patients:As for participatory projectsand researchBeing in control of theproject (and the researchprocess if applicable).

DISADVANTAGES

• For project teams:No ongoing patient reviewof the project workNo patient support indisseminating results topatients.

• For patients:Length of time fromconsultation to publicationof results can be frustratingfor patientsIndividual patients frequentlynot informed of the resultsor their impact on policy.

• For project teams:Finding patients withexperience relevant to theproject or research subjectAdditional cost andexpenses – possiblyincluding payment forpatients' expertiseWorking with patients asequals rather than in apatient/health professionalrole can feel challenging.

• For patients:Involvement can betokenistic – ‘ticking the box’Areas for genuineinvolvement may be limited.

• For project teams:Harder to get projectfunding if no academicpartner.

• For patients:Harder for research resultsto be accepted byacademics.

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Glossary

GLOSSARY OF TERMS

Some readers of the handbook will be new to Europeanprojects. Therefore, whenever terms that are obscure orunusual are used in the handbook they were underlined.A full description of the underlined words is located inthis glossary of terms.

Readers can also look at the glossary entries inthe companion Value+ Toolkit.

The EC and its executive agency for public healthhave their own terminology for referring to projects.It is always the Commission’s official definitions ordescriptions that represent the formal, accepted waysof referring to project matters.

All project co-ordinators, whether actual or potential,need to make themselves familiar with these terms.It is the official vocabulary that they will need to usewhenever they are involved in making proposals forEuropean projects or in coordinating actual projects.

The short descriptions that are provided in the glossaryare never meant to replace any official EC explanations.

Sources of definitions

Some of the sources of the definitions outlined in theglossary include:

CORDIS - The Community Research and DevelopmentInformation Service (CORDIS) of the EuropeanCommission provides an English language glossaryof terms:http://cordis.europa.eu/guidance/glossary_en.html

DBIS - The United Kingdom’s Department of BusinessInnovation & Skills (DBIS), Project Centre glossary ofterms:http://www.berr.gov.uk/aboutus/corporate/projectcentre/glossary/page10895.html Accessed 24/09/2009

The Executive Agency for Public Healthhttp://ec.europa.eu/eahc/ Accessed 11/11/2009

The New Oxford Dictionary of English (1998)

Glossary entries

Associated partner – An associated partner participatesin the project on the same basis as the main partner inthe project. It has a contractual relationship with theagency responsible for the contract

Benefits basket – The benefit basket refers to the totalityof services, activities, and goods covered by publiclyfunded statutory/mandatory insurance schemes (socialhealth insurance, SHI) or by National Health Services(NHS)

Call for proposals – The different Directorates-General(DG) of the EC have programmes that finance projects.The announcement of possibilities for financing is a “callfor proposals” that explain the topics, eligibility criteria,procedures and deadlines to submit project proposals.Calls are launched at various intervals during the yeardepending on the DG

Capacity-building – Improving the skills of people so asto extend the activities in which they can take part

Case study – A process or record of research in whichdetailed consideration is given to the development ofa particular person, group or situation over time

Checklist – A list of items required, things to be done,or points to be considered, used as a reminder

Civil society – Is composed of all the voluntary civic(i.e. related to citizens) and social organisations andinstitutions that form the basis of a functioning societyas opposed to the structures of the state and ofcommercial institutions. Civil societies are often populatedby organisations such as registered charities, developmentnon-governmental organisations, community groups,women's organisations, faith-based organisations,professional associations, trade unions, selfhelp groups,social movements, business associations, coalitionsand advocacy groups

Co-funded (also co-financed) – A co-funded projectis one that is paid for by both the EC and the projectpartners that are carrying out the work. The fundingfrom other sources will need to make up the differencebetween one funder’s contribution and the total costof the activity

Co-financed – See co-funded

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Collaborating partner – A collaborating partner isa member of a project consortium that offers itscollaboration but does not participate in the project onan active day-to-day basis, is not contractually boundto the project, and does not receive any form of fundingfrom the EC. It provides added value to the project andparticipates in the project together alongside the mainand associated partners

Complementarity – The interrelation of reciprocitywhereby one thing supplements or depends on the other

Consortium – A group of organisations which joinstogether for a specific purpose. In an EC con-text, theseare the partners in a project. In this handbook, we oftenrefer to them as a ‘project team’ or ‘team’

Consultation – A technique of social interaction whereopinions of all stakeholders are sought before a decisionis made

Database – A structured set of data held in a computer,especially one that is accessible in various ways

Deliverable – A thing to be provided, especially as aproduct of a development process. An end product ofa project or the measurable result of an intermediateactivity

DG SANCO – See Directorate General for Health andConsumers

Directorate-General (DG) – A department of the ECresponsible for a particular policy area. Examples currentlyinclude health, employment, enterprise, informationtechnology, justice and law

Directorate General for Health and Consumers– DG SANCO aims to make Europe's citizens healthier,safer and more confident. The European Union hasestablished laws on the safety of food and otherproducts, on consumers' rights and on the protection ofpeople's health. It is the responsibility of national, regionalor local governments in EU countries to apply the EU'shealth and consumer protection laws. The DirectorateGeneral for Health and Consumers ensures that thelaws are applied properly in each country, and to keepthe Europe-wide legislation relevant and up-to-date.http://ec.europa.eu/dgs/health_consumer/index_en.htm

Dissemination – In an EC context, it refers to theprocess of making the results and deliverables of aproject available not only to a specified target group orgroups, but also more largely to all relevant stakeholdersand the wider public

Field research – Generally considered to be researchor study that takes place in a non-laboratory or non-academic setting, i.e., done “in the field”. Its historicalbackground comes from anthropology and ethnography.Examples of field research include participant observationand less formal means of data collection and surveyresearch

Gender – This term refers to the activities, attributes,behaviours and roles that a given society considersappropriate for men and women. This distinguishesbetween male and female on the basis of cultural andsocial differences. See also sex

Governance – The combination of processes andstructures implemented by the Board (consistingof representatives elected by the organisationmembership) of an organisation to inform, direct,manage, and monitor the activities of the organisationtoward the achievement of its objectives

Health literacy – “Health Literacy is the ability to makesound health decisions in the context of every-day life –at home, in the community, at the workplace, in thehealth care system, the market place and the politicalarena” is used in Kickbusch, I., Wait S., Maag, D. (2005)Navigating Health: The Role of Health Literacy. London:Alliance for Health and the Future, InternationalLongevity Centre-UK. www.ilonakickbusch.com/health-literacy/NavigatingHealth.pdf/. From a patient'sperspective, the knowledge and competence gainedthrough health literacy lead to the strength andempowerment needed to manage well a disease/condition and its impacts on quality of life

Health-related – This term is used to indicate projectsthat in some form or another are related to health.It could be projects focusing on advocacy on health,clinical trials, health education or development oftechnologies

How to – Is an informal, often short, description of howto accomplish some specific task

Lifecycle – See project lifecycle

Macro-level – The overall, general or large-scale level ofa concept or process. In social work, the macro-levelinvolves society or communities as a whole. This typeof social work practice would include policy formingand advocacy on a national or international scale.

Micro-level – Focuses on individuals and theirinteractions. In social work, it involves service toindividuals and families

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Glossary

Member State – A Member State of the European Unionis any one of the 27 sovereign states that have accededto the European Union (EU) since its de facto inceptionin 1951 as the European Coal and Steel Community,http://en.wikipedia.org/wiki/Member_State_of_the_European_Union

Outcome – The way a thing turns out; a consequence.In a project, it can be equated with the project results

Patient involvement – It means that patients take anactive role in activities or decisions that will haveconsequences for the patient community, becauseof their specific knowledge and relevant experienceas patients

Patient organisation – A not-for-profit non-governmentalorganisation (NGO). Its members are patients with aparticular condition or their informal, unpaid carers,that is, friends and family

Peer review – This is a process used in the academicor scientific environments in which the work of oneresearcher is subject to impartial (and often anonymous)criticism and review by other appropriately-qualifiedresearchers. It is sometimes also called refereeing. It isalmost always used before an academic or scientificarticle is published, and especially in academic journals

Policy officer – An EC project officer who focuses onpolicy. Note that this may be health policy or it may equallywell be another example of policy such as educationand training policy, employment policy, research policy,telecommunications or technology policy

Process-related – It refers to a series of actions, changes,or functions bringing about a result. It focuses more onthese actions than on the results

Project actors – It is the collective definition used is thishandbook for project co-ordinator, project leader andproject promoter

Project co-ordinator – In this handbook a projectco-ordinator is a staff member in charge of managinga project within an organisation

Project leader – According to this handbook is theorganisation which leads the consortium implementinga project

Project life cycle – A sequence of defined stages overthe full duration of a project

Project officer – An EC official appointed to act asthe contact-point for the project in all matters that affectthe EC

Project promoter – Is an organisation or an individualpromoting politically or financially a project withoutnecessarily being involved in its implementation

Project proposal – A plan prepared for a funder, showingwhat an applicant for funding wants to achieve using thefunding, and how they will achieve it

Project team – The people responsible as a whole forcarrying out project tasks

Pull quote – A quote from an article or paper (in ourcase, from the text itself or interviews, focus groups, orprojects that highlights a key topic around meaningfulpatient involvement in health-related projects). It is aterm that is often used in journalism or publishing.Most people see pull quotes used in the newspapersor magazines that they read

Reference book – This is a collection of information thatis usually of a specific type, and compiled in a book foreasy reference. The information is intended to be foundquickly when needed. A reference work is usually madereference to for particular pieces of information ratherthan to be read cover to cover. The writing style usedin a work of this sort is informative. The use of the firstperson is avoided, and facts are emphasised

Sex – Either of two the main categories (male andfemale) into which humans are divided on the basis oftheir reproductive functions. This distinguishes betweenmale and female on the basis of biological differences.See also gender.

Scientific officer – An EC project officer who focuseson science

Stakeholder(s) – Someone who has an interest ina particular issue or decision

Survey – An investigation of the opinions or experiencesof a group of people, based on a series of questions

Tokenism – Making a symbolic gesture towardsincluding people from a minority group, without allowingthem to have any real influence, thereby giving a falseimpression of their involvement

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Toolkit – A kit of this sort contains a set of tools (models,methods, and techniques). In the case of Value+,the tools contained in the toolkit are ones that patientorganisations and patients may use to facilitate theirinvolvement in a European project, and from whichproject co-ordinators may get a good sense of whatmeaningful patient involvement is about

Work package – A business term used in EC-fundedprojects for a set of activities which together areplanned to meet one of the project goals, for example,a dissemination work package describes howthe project results will be publicised

Work programme – The programme of a specific DG.It has an avarage duration of 5-7 years.

65

Glossary

About the European Patients’ Forum (EPF)

The European Patients’ Forum was set up in 2003 to become the collective patients' voice at the European level,manifesting the solidarity, power and unity of the European Union patients’ movement. EPF is a not-for-profit,independent organisation and umbrella representative body for patient organisations throughout Europe.We currently represent 40 member organisations that consist of chronic disease specific patient organisationsworking at the European level, and national coalitions of patient organisations. In total, we reflect the voice ofan estimated 150 million patients affected by various diseases in the EU.

EPF’s vision is to establish patient-centred equitable healthcare through the European Union. Our core valuesemphasise a patient-centred approach to healthcare, inclusiveness, non-discrimination, patient empowerment,consultation and independency and transparency. We adopt a holistic interpretation of healthcare to includeprevention, and the social, economic, environmental, cultural and psychological aspects of health.

EPF acts as a catalyst and consultative partner for positive change in EU healthcare systems and as a “watchdog”,closely monitoring EU policy and legislative initiatives. We offer our members EU healthcare intelligence, and baselinepatient rights policy responses to enable them to focus on disease specific responses. We support dialogue andnegotiation among a broad range of EU level health stakeholders and facilitate the exchange of good practice andchallenges of bad practice on patients' rights, equitable access to treatment and care, and health-related quality oflife between patient organisations at the European and Member State levels.

For more information visit www.eu-patient.eu

European Patients’ ForumRue Belliard 651040 BrusselsBELGIUMPhone: + 32 2 280 23 34Fax: + 32 2 231 14 47Email: [email protected]: www.eu-patient.eu

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Value+ “Promoting Patients’ Involvement in EU supported health-related Projects”

PROJECT LEADER

ASSOCIATED PARTNERS

COLLABORATING PARTNERS