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

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 http://www.invo.org.uk/

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 http://www.invo.org.uk/

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

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

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

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

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

PPI: Sources of help INVOLVE http://www.invo.org.uk/ Cambridge Biomedical Centre https://www.cuh.nhs.uk/for-public/patient-and-public-involvement-panel http://www.clahrc-eoe.nihr.ac.uk/2016/06/introduction-patient-public-involvement-ppi-promise-qualitative-project-blog-lorna-rouse/