R ese a rch with P atient and P ublic Inv o lvement a R ealis t Evaluation Marion Cowe Elspeth Mathie Patricia Wilson on behalf of the RAPPORT research team Research approach in RAPPORT ID: 379834
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RAPPORT
Research with Patient and Public Involvement: a Realist EvaluationMarion Cowe, Elspeth Mathie, Patricia Wilson on behalf of the RAPPORT research teamSlide2
Research approach in RAPPORTRealist evaluationPI in research is a complex intervention/practiceNew way of working & behaving & requires collective action
Context, processes and people all involvedHow 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.aspxSlide3
Six topic areas
5. Diabetes6. Cystic fibrosis
Across life span, clear clinical diagnosis, emphasis on self-management & lifestyle change. PI well established through powerful patient organisation
Life limiting condition affecting children & young people. Care in secondary & specialist centres. Strong focus on lab based research.Slide4
North East
South West
London
East of England
4 geographical regionsSlide5
Research PlanStage 1 : Scoping of the UKCRN portfolioNon-commercial, current or completed within last 2 yearsNational snapshotStage 2: Survey of chief investigators in 4 regionsStage 3: Case studies
Up to 20 across 4 regions and 6 topic areasPI processes, outcomes and impact tracked for 18 monthsSlide6
Public involvement in RAPPORTProposal development –the University of Hertfordshire PIR groupReference groupsService users with learning disabilities
Parents, children & young people with cystic fibrosisCo-applicantsMarion Cowe & Diane Munday (PIR group)Co-researchersMC & DM plus a mother of child with CFAdvisory group2 members of the Norfolk PPIRes panel1 lay member from RCGPIndependent lay chairSlide7
Progress to Date: Stage 1: Scoping1465 studies identified nationally in 6 topic areasTotal studies included 837
Outside 4 Areas480Document analysisInside 4 Areas357Survey
837Slide8
Survey Progress to Date:Stage 2: Survey Bristol on-line SurveyE-mail sent out January 2012
60 responses out of 357 16.8% response rateFurther reminder to be sent outSlide9
What stage have/will lay people/service users been involved in the project?Slide10
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)Slide11
Have the lay
people/service users received any training for their involvement in the study?Have the lay people/service users involvement in the study been directly costed for in the grant application?Slide12
Case Studies
Type of researchTopic areaArthCFDem
Diab
LD
PH
Arth
CF
Dem
Diab
LD
PH
Lab based
Users
as co-researchers
North EastLondonLab based
Users as co-researchersEast of EnglandSouth WestSlide13
Voice from the Field“Getting the public interested in research in general so that participating becomes the cultural norm”Slide14
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 Disclaimer
The 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.