Researchers should Researchers should ignore the views of ignore the views of

patients (?!!)patients (?!!)

Dr Mark Welfare, Senior Lecturer, Dr Mark Welfare, Senior Lecturer, gastroenterologist, researcher, gastroenterologist, researcher,

occasional patient/careroccasional patient/carer

Should patients tell researchers Should patients tell researchers what to do and if so, how?what to do and if so, how?

• My assumption is that my title is preposterous and therefore the first part of the question is answered.

• The important question, and its reciprocal, then becomes – ‘How can patients/the public influence researchers?’– ‘How can researchers know who and what to listen

to?’

Mapping my talkMapping my talk

• What do we mean by research?

• Some observations about patient views

• Review some methods of patient involvement

• Suggestions for patients and researchers

• Summary

Overarching bodies: Government, AMRC, ABPI

Funders: Research councils, HTA, Wellcome, Individual charities and companies

Research outputs and secondary research-associated industry: Journals, Cochrane, NICE, Royal Colleges, other professional bodies Reports, publication, meta-analyses, reviews, guidelines

Clinical practise/NHS: public health, purchasers, all clinicians

Researchers: Individuals, supervisors, departments

Research ‘providers’: Universities, NHS Trusts/primary care

External drivers: RAE, NHS drivers (waiting times, cost containment), Government initiatives (Best research for best health, Research for patient benefit)

General public: Individual patients, carers, patient representative groups, advocates, pressure groups, media, non-patients

What is research for?What is research for?

• This may depend on your role in the process– Improve patient care– Further basic understanding of science– Improve population health– Career promotion– Obtain funding/spend funding– Gain influence– Maintain UK plc competitiveness (Gordon Brown)– Good headlines– Profits

Where is the money spent nowWhere is the money spent now

• Industry 5 billion, charities 650 million, Government 1.7 billion

• UKCRC study of £950 million– Basic science 34%– Aetiology 34%– Prevention 2.5%– Treatment development and evaluation 16%– Detection, screening, diagnostics 5%– Health service delivery 5%

Current research environmentCurrent research environment• Centralisation of effort• Fewer academics, fewer NHS doctors involved

in their own research• Less involvement of day to day clinicians• Increasing large scale commercial drug trials• Increasing bureaucracy• NHS priorities seem to be costs and waiting

times• ‘Publish or die’ influences researchers’ priorities

Researchers viewpointResearchers viewpoint

• ‘Well how can we ask patients about their views if we have not educated them before’

• Who to listen to, don’t want to get hijacked

• Already plenty of other people to satisfy – employer, funder, research network, ethics, journal editors, department

So, what do we know so far about So, what do we know so far about patient viewspatient views

• Not a lot! JLA review found only 6 publications comparing patient and researcher priorities and <150 reporting patients views overall

• Even fewer studies have looked at variation in opinion between patients

• Patients are varied and don’t all agree amongst themselves.

Previous studiesPrevious studies

• Have shown considerable mismatch between patients and researchers

• Greater interest in educational initiatives and physio, rather than drugs and surgery, in rheumatological conditions and in researching associated symptoms such as fatigue and general well being (Tallon 2000; Kirwan 2005).

Themes generated in a local study Themes generated in a local study in patients with ulcerative colitisin patients with ulcerative colitis

• finding the cause of colitis• cure of colitis• prevention of colitis • living with colitis• treatment and its side-effects (conventional,

complementary and surgical) • control of particular symptoms• information about colitis• communicating with health professionals• service delivery.

Our study of patients and researchers Our study of patients and researchers in colitis using Q sort methodologyin colitis using Q sort methodology

• Q sort was a very interesting way to sample opinion and enabled ranking of priorities

• Five ‘types’ of view were identified, such as ‘care not cure’, ‘medical model’ ‘academic viewpoint’, ‘patient empowerment’.

• Views of professionals and patients are both overlapping and different. Patients fall into very different groups. Gives an idea of complexity of the issue.

Factor 1 Academic views – interest in Factor 1 Academic views – interest in developing new frontier of knowledgedeveloping new frontier of knowledge

• 6 health professionals and 3 patients mapped to this factor.

• Priorities were cure, cause & prevention which involved modifying genes and understanding the role of genes.

• Unimportant was research into service delivery such as understanding access to care and what factors influence this and lifestyle factors such as diet.

Factor 3 – Medical Model GroupFactor 3 – Medical Model Group

• 14 patients loaded on this and only one health professional.

• They express trust in Drs, want to improve medical care. They value research into cure, prevention and cause but want the results available in near future and put into practice quickly. Want research into improving symptoms, effective medication and medical care.

• Negative statements were about research into self help, improving social problems, raising awareness and research which took ten years or more.

Patient influencePatient influence

• The art then is to use all these drivers to influence the many different stages of the process and overcome some barriers

• Aim to influence all stages and all players in the research process, not just confine efforts to researchers

Current modelsCurrent models

• Patient representatives at board level

• Consultation panels or groups

• Primary research into patient views

• Examine treatment uncertainties and develop DUETs

• Patient organisations fund research – how do they assess patient views?

Lateral thinkingLateral thinking

• Develop a usefulness quotient or structured review system for papers based on factors important to patients (e.g. timeline, non-invasiveness, patient control, lack of side-effects, originality) and feed back to authors and journal editors – the counterpoint to peer review

CautionsCautions

• Patient ‘representatives’, ‘expert patients’• Representativeness of organisations• Patients are not the public – children’s

cancer effect• Our study using focus groups suggested

that most patients wanted self help groups but when organised, few patients wanted them – methodology was biased towards patients who attended groups!

For academicsFor academics• The vast sums spent on basic research could

dry up if more results are not seen soon and if the research community moves out of step with public opinion e.g. cow human hybrids, Northwick Park incident

• Democratisation of research should therefore be a key goal of the next 20 years

• We need a two way dialogue

For AcademicsFor Academics

• In: Start to develop robust and accurate methods for interacting with patients and start listening more

• Out: Develop better means of explaining what science is doing and where we are going and the limits of possibilities

• Example: what are the potential benefits of ever more powerful immunological therapies in inflammatory disorders such as colitis and arthritis

SummarySummary

• NHS, government and industry want to further pharmaceutical trials

• Proportion of budget spent on educational and psychological interventions, prevention and health service issues is low but they appear to be highly valued by patients

• Patient views are complex and likely different from the public

• Researchers have some incentives for involving patients but also many barriers