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.