sec3 2014 engaging leeds welcome to the public engagement symposium at sec3 2014 chaired by alexa...
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SEC3 2014 Engaging Leeds
Welcome to the Public Engagement Symposium
at SEC3 2014Chaired by Alexa Ruppertsberg,
FMH
SEC3 2014 Engaging Leeds
Engaging Students: public engagement – where does it
begin and end?
Public Engagement Symposium
Stella CottrellDirector for Lifelong Learning
SEC3 2014 Engaging Leeds
Students as partners in the creation and delivery of outreach
activities
Public Engagement Symposium
Dr Dave LewisIMST, FBS
SEC3 2014 Engaging Leeds
Business and Community Engagement; In the Curriculum
Public Engagement Symposium
Dr Sarah UnderwoodLecturer in Enterprise
Director of Undergraduate Student Education (LUBS)
Deputy Director of Leeds Enterprise Centre
SEC3 2014 Engaging Leeds
• Why?
• The broad range of engagement with the community across the curriculum
• Example – LUBS2015 Volunteering & Enterprise
• How can we foster these relationships?
What’s to discuss?
Dr Sarah Underwood, Public Engagement Symposium
SEC3 2014 Engaging Leeds
Dr Sarah Underwood, Public Engagement Symposium
Why?
SEC3 2014 Engaging Leeds
• Guest lectures• Speaker series• Live case studies• Assessed projects• Student mentor
Breath of opportunity increases interest and helps to build stronger relationships
How do we engage the community with the curriculum?
Dr Sarah Underwood, Public Engagement Symposium
SEC3 2014 Engaging Leeds
• Example of holistic engagement with a module• 10 credit, elective module, level 2, semester 2
Businesses (O2, logistik, Pincent Masons) // Community Groups (Holbeck in Bloom, Growing Zone, Wye Beck Valley Pride)
Students understand and critique (CSR) corporate social responsibility policies
Design a project that meets the CSR agenda and serves the community group
Day of Action – with businesses!
Students reflect on project
LUBS2015 Volunteering & Enterprise
SEC3 2014 Engaging Leeds
• Needs management and co-ordination• Should be seen as beneficial on all sides• Find ways to recognise, reward and sustain a lasting
relationship… e.g. Enterprise Ambassadors
Sustaining the relationship
Dr Sarah Underwood, Public Engagement Symposium
Thank you for listening!
SEC3 2014 Engaging Leeds
Public Engagement Symposium
Delia MuirPatient and Public Involvement (PPI) Officer
Leeds Institute of Clinical Trials Research
What’s to be gained from
Patient Public Involvement (PPI)
in the design and delivery of clinical research?
Dr Sue PavittReader in Applied Health Sciences
Leeds Institute of Health Sciences
Dr Paul HydeClinical Lecturer Restorative Dentistry
School of Dentistry
Overview
Aim
To understand how Patient Public Involvement (PPI ) can add value to clinical research
Objectives
Review the role for PPI in ensuring the research has patient benefit focus
Illustrate through a Leeds led dental clinical trial how PPI can contribute to improve:
The relevance of the research question Study success – design, operation and delivery of clinical research Advancement of scientific knowledge Delivery of patient benefits
Context - why do we do Clinical Research?
Evaluate whether a new treatment or device can help people with a particular medical condition?
Determine what is the most effective treatment/ care for people with that condition
To allow medical professionals and patients to gain information about the benefits, side
effects and medical uses of new treatments
Discover new ways to use existing therapies
e.g. using aspirin in patients recovering from strokes
What is Patient Public Involvement (PPI)?
What is Patient Public Involvement (PPI)?
Who are the PP in PPI?
By Public and Patient we mean:
• Patients / potential patients
• People who use health and social services
• Carers (unpaid)
• Family members
• Disabled persons
• Members of the public
• Organisations that represent patients and public’s views
• Individuals/groups that are affected by health or clinical issues
What is the I in PPI?
‘An active partnership between the public and researchers in the research process…’
Research with or by the public
Research to, about or for the public
IMPROVES PATIENT PUBLIC
AWARENESS OF IMPORTANCE OF CLINICAL RESEARCH
Levels of Involvement
Increasing empowerment of PPI reps within the research process
USER CONTROL
Focus of power, initiative & decision
making is with service users
PARTNERSHIP/
COLLABORATIONActive collaboration
between ‘professionals’ and lay people
CONSULTATION
Lay views used to
inform decision-making
ENGAGEMENT
Education / Knowledge transfer
to Public
Why should we do PPI?
PPI ensures research has patient relevance and asks the right question
PPI in Designing a Research Study
The Important 4th Question: What do patients think?Are we asking the right question to improve the
health and quality of life for patients?
Questions asked in Designing a Clinical Study
1st choices among research priorities in survey of patients*
Surgery - Knee replacement (35.8) Education and advice (20.9) Complementary therapy (6.0) Drugs (4.5) Injections in the knee (4.5) Physical therapy (3.0) No treatment at all (1.5) Miscellaneous other priorities (23.9)
* Tallon D, Chard J, Dieppe P.
Relation between agendas of the research community and the research consumer. Lancet 2000; 355:2037-40.
PPI and research priorities:
Osteoarthritis of the knee
380 trials of drugs29 trials of complementary therapies24 trials of physiotherapy/exercise14 trials of education13 trials of surgery
Analysis of 460 randomised trials of treatments for osteoarthritis of the knee
Case Study 1: Getting the right research question(s)
Example from Oral Cancer
Oncologist & surgeon – focus 5-year survival at any cost
Trial designed to address future patients needs - providing complete impact of treatment on survival and quality of life
Patient sees trial as important and more likely to participate
Patient – focus quality of life issues – function & disfigurement
The impact of Patient Public Involvement on design, recruitment and operations of
Clinical Trials
Carol and Shirley helped work with the research team to help us understand how the loss of all their natural teeth has impacted on their life
How denture wearing affects daily activities like eating, talking and laughing
How poor fitting dentures can lower your self-esteem and be painful
We understood the importance of constructing a complete set of dentures for the patient and their confidence and being self-assured about their appearance and everyday activities in public – smiling & eating
Case Study 2: PPI – Co-Designing a Denture trial to meet patient needs
Case Study 2: PPI – Impact on Participant Literature
Trial Literature Reviewed Recommendations to make the
Patient Information Leaflets more understandable
Improved Trial Operations Trial is explained better – results
in improved uptake Timely ethics approval Recruited participants on time
IMPROVDENT – A clinical trial to improve the fit of dentures by testing two dental impression materials
Case Study 2: PPI – Impact on Trial Design
Trial Design Reviewed The PPI reps made recommendations for
comparing the two denture sets accounting for how people wear
their dentures Ensured patient reported
outcomes measured Ensure qualitative research has
informed guided questions
Improved Pragmatic Trial Design Trial is more participation friendly
Improved Patient reported outcomes
Trial is more likely to yield meaningful data for tangible
patient benefit
PPI reps are integral members of the trial management group
Case Study 2: PPI – Impact on Trial operations / logistics
Trial Operational input Appointments available largely
between 10am - 3pm Accommodates travel to
appointments on Senior Citizen Bus Pass
Improved Trial Operations Trial is “user friendly” Participants less
inconvenienced Few cancelled appointments Recruitment to schedule
PPI reps are integral members of the trial management group
AWARENESS ADDITIONAL SUPPORT
Better designed trials improve Recruitment & Retention
RECRUITMENT 2/3rds of trials fail to reach target and require expensive extensions
RETENTION 1/3rd enrolees drop out
Expensive extensions or Underpowered
trials
Trial team know that the PPI has improved trial operations and design resulting in a tangible impact on trial recruitment:
Faster ethics approval a timely trial opening
Participant friendly trial keeps refusals to a minimum
Maintains recruitment to schedule trial within budget
Case Study 2: PPI – Impact on Trial recruitment & retention
In Summary - Benefits of PPI
User involvement in clinical research is valuable and ensures:
Different perspectives heardFundable - Research priorities identified by patients deliver research that is relevant and likely to yield patient benefitsOutcomes important to users are measuredImproved research design Improved study logisticsAccess to patients - via peer networksAccess ‘hard-to-reach’ patient groups
Effective dissemination Improved research that addresses: Patient needs, Achieves recruitment & retention to timelineDelivers to target and within budget
The Future - PPI central role in Clinical Research
Improved Health
Study designed to take account of patients needs
Study operations / logistics made patient friendly
Patient literature simplified
Ensuring informed consent & good
enrolment to study
Patient
Benefit
Improved
Recruitment & Retention
Improved
Delivery of Clinical Research & Evidence-based
Medicine
Any Questions?
Dr Sue Pavitt
Leeds Institute of Health Sciences
+44 (0) 113 343 6985
SEC3 2014 Engaging Leeds
How do you utilise the (unexpected) opportunity to communicate big-concept
national research to a non-expert audience?
Public Engagement Symposium
Constanze VagelerSchool of Geography
SEC3 2014 Engaging Leeds
Theatre in education outreach
Public Engagement Symposium
Carreen DewFaculty of Medicine & Health