Published on March 5, 2012
Research with Patient and Public Involvement: a Realist EvaluationMarion Cowe, Elspeth Mathie, Patricia Wilson onbehalf of the RAPPORT research team
Research approach in RAPPORT• Realist evaluation• PI in research is a complex intervention/practice – New way of working & behaving & requires collective action – Context, processes and people all involved – How does PI get embedded as the normal practice in all research (normalization)?• Normalization Process Theory (May & Finch 2010) – a useful tool in exploring complex interventions http://www.normalizationprocess.org/home.aspx
Six topic areas • Challenges in accessibility, well established PI1. Learning frameworks informing policy, practice &disabilities research • Participants who do not see themselves as2. Public Health service users. Community interventions, variety of settings, harder to reach groups. • Predominantly older age group, primary care3. Dementia setting. Developing research that is inclusive • Across life span but predominantly older people,4. Arthritis variety of care settings. Strong patient organisation •Across life span, clear clinical diagnosis, emphasis on self-management & lifestyle change. PI well5. Diabetes established through powerful patient organisation •Life limiting condition affecting children & young6. Cystic fibrosis people. Care in secondary & specialist centres. Strong focus on lab based research.
4 geographical regions North East East of EnglandSouth West London
Research Plan• Stage 1 : Scoping of the UKCRN portfolio – Non-commercial, current or completed within last 2 years – National snapshot• Stage 2: Survey of chief investigators in 4 regions• Stage 3: Case studies – Up to 20 across 4 regions and 6 topic areas – PI processes, outcomes and impact tracked for 18 months
Public involvement in RAPPORT• Proposal development –the University of Hertfordshire PIR group• Reference groups – Service users with learning disabilities – Parents, children & young people with cystic fibrosis• Co-applicants – Marion Cowe & Diane Munday (PIR group)• Co-researchers – MC & DM plus a mother of child with CF• Advisory group – 2 members of the Norfolk PPIRes panel – 1 lay member from RCGP – Independent lay chair
Progress to Date:• Stage 1: Scoping• 1465 studies identified nationally in 6 topic areas• Total studies included 837 Outside 4 Areas Inside 4 Areas 480 357 Document 837 Survey analysis
Survey Progress to Date:• Stage 2: Survey Bristol on-line Survey E-mail sent out January 2012 60 responses out of 357 16.8% response rate • Further reminder to be sent out
What stage have/will lay people/service users been involved in the project? 40 35 30 25 20 15 10 5 0
Levels of Involvement• “This study was mainly lab based with some observation of staff movement. Patients were not involved either as participants or in design” (Public Health Study – hospital infection)• “We routinely include our Participant Advisory Panel in designing future proposals and have considered their opinions in study design and many other aspects of our research. We believe they play an essential part in contributing to the success of our research from the application stage through to completion and dissemination of results” (Diabetes Study)
Have the lay Have the lay people/service users people/service usersreceived any training for involvement in the studytheir involvement in the been directly costed for study? in the grant application? No No Yes Yes 35% 48% 52% 65%
Case StudiesType of Topic arearesearch Arth CF Dem Diab LD PH Arth CF Dem Diab LD PHLab based North East LondonUsers as co-researchersLab based East of England South WestUsers as co-researchers
Voice from the Field“Getting the public interested in research in general so that participating becomes the cultural norm”
HSR Funding AcknowledgementThis project was funded by the National Institute for Health Research Health Services & Delivery Research programme (project number 10/2001/36).Department of Health DisclaimerThe views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HSDR programme or the Department of Health.
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invoNET 2012 « Go back ... The sixth invoNET workshop was held on Tuesday 21 February 2012 at the ... Patricia Wilson, Marion Cowe, Elspeth Mathie ...
12.00am – 12.15pm Patricia Wilson, Marion Cowe, Elspeth Mathie University of Hertfordshire RAPPORT, ReseArch with Patients and Public
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