RaPP oRt 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

Six topic areas 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. 1. Learning disabilities 2. Public Health 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 3. Dementia 4. Arthritis 5. Diabetes 6. 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.

North East South West London East of England 4 geographical regions

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 Inside 4 Areas 357 Survey 837

Survey Progress to Date: Stage 2: Survey Bristol on-line Survey sent out January responses out of % response rate Further reminder to be sent out

What stage have/will lay people/service users been involved in the project?

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?

Case Studies Type of research Topic area ArthCFDemDiabLDPHArthCFDemDiabLDPH Lab based Users as co- researchers North EastLondon Lab based Users as co- researchers East of England South West

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.