Research with Patient and Public Involvement: a Realist Evaluation Marion Cowe, Elspeth Mathie, Patricia Wilson on behalf 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 1. Learning disabilities 2. Public Health 3. Dementia 4. Arthritis 5. Diabetes 6. Cystic fibrosis • Challenges in accessibility, well established PI frameworks informing policy, practice & research • Participants who do not see themselves as service users. Community interventions, variety of settings, harder to reach groups. • Predominantly older age group, primary care setting. Developing research that is inclusive • Across life span but predominantly older people, variety of care settings. Strong patient organisation •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. 4 geographical regions North East East of England South 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 480 Document analysis 837 Inside 4 Areas 357 Survey 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 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? No No Yes Yes 35% 48% 65% 52% Case Studies Type of research Topic area Arth CF Lab based Dem Diab LD North East PH Arth CF Dem Diab LD London Users as coresearchers Lab based East of England South West Users as coresearchers PH Voice from the Field “Getting the public interested in research in general so that participating becomes the cultural norm” HSR Funding Acknowledgement This 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.