1. Overcoming Practical Problems in Research PPI before and during research
Carole Gardener: Research Assistant/PhD Student
University of Cambridge Primary Care Unit

2. Public and Patient Involvement
What?
“research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
Patients and the public offer unique and invaluable insights
Increases transparency and accountability
Funders increasingly expect PPI involvement
Why?
INVOLVE

3. How? Members of a project advisory group
Public and Patient Involvement
How?
Members of a project advisory group
Commenting on and developing research materials
Co-applicants on a research project
Carrying out the research
Identifying research priorities
INVOLVE

4. Public and Patient Involvement SNAP2/I’m Fine Studies
Focus on people with advanced COPD
Long term–life limiting condition
Huge impact on daily life/mental well-being/family and friends
Many barriers to having their voice heard
Key priority to ensure they are offered the opportunity to participate in the research process

5. Along the research journey
PPI: Practical Problems
Where do I find people?
Existing PPI Panels
Peer support groups
Along the research journey
Public Engagement

6. PPI: Practical Problems
How/how much should I involve people?
Using a range of strategies
Addressing support needs
Meetings
Skype
Parking
Time
Family support
Making meetings “attractive ”
Making it easy for people to say no

7. PPI: Practical Problems
How do I make sure that what we do is useful?
Planning and communication
Acknowledging and responding to differences
Clear plan
Chair – involving everyone
Keeping in touch
Negotiation
Listening to people’s stories
Incorporating disagreements

8. PPI OUTCOMES: PPI member was a co-applicant on new funding application
Helped write the Plain English Summary
PPI members advised on the terminology in Participant Information Sheet
Suggested we stopped using ‘Healthcare professional’ and replaced with professional name (OT/Nurse/GP etc.)
PPI members commented on the format of a new intervention
Fed back that the researcher design was ‘uninspiring.’ Suggested using professionals to produce a patient-friendly design

9. PPI: Sources of help INVOLVE http://www.invo.org.uk/
Cambridge Biomedical Centre