1. Demonstrating PPI in Funding Applications

2. Introductions Eileen Wright- HSC R&D Personal and Public Involvement(PPI)Panel Member, and Voices4Care member Gail Johnston- Programme Manager, HSC R&D Division

3. Outline PPI…… What it is and what it isn’t Who, when, why and how Researcher responsibilities Benefits of PPI Q&A

4. PPI in research - What is it? INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

5. PPI in research - What it isn’t? Raising awareness of research Sharing knowledge or engaging and creating a dialogue with the public Recruitment of patients or members of the public as participants in research But these activities and PPI can complement each other (INVOLVE 2012)

6. Defining PPI in Research Involvement=active involvement in research decisions Participation= volunteering for research studies as a subject Engagement=raising awareness/sharing knowledge/information giving

7. The Research Cycle

8. Types of PPI Activity in Research Identifying research topics/ questions Designing research studies/co- applicants/members of steering committees/project boards Advising on methods or recruitment strategies Developing patient information materials Undertaking interviews/focus groups/data collection Analysis of results Dissemination to lay or professional audience/co-authors

9. Why Use PPI in Research? Different Perspectives Identification of meaningful topics Funding areas prioritised Better information More practical methods Higher recruitment Richer Data Findings more relevant Dissemination targeted More timely interventions

10. Demonstrating PPI in Applications for Funding (EW) Has the applicant demonstrated that they have involved service users and the public in identifying the research topic, prioritizing the research questions and/or in preparing the application? Has the applicant demonstrated that they have sought to involve service users and the public, including from appropriate groups, in a partnership role in the research process rather than solely as research participants? Does the proposal demonstrate an understanding of the benefits of PPI? Is the level of/approach to PPI appropriate? Does the applicant aim to incorporate PPI in the reporting/dissemination of the study?

11. At the planning stage: How - Consider groups or fora relevant to your area When – At outset Where – Short presentations to these groups/recruit 2 or more to sit on steering committee Why- Articulate how this helped define design of research/direction of travel

12. At the implementation stage: How - Engage with your steering committee as to how you will recruit your sample When- At this point useful to have another independent PPI view Where - Interim reports to interested fora Why- Underwrites the value researcher places on PPI

13. At the reporting stage: How - Involve your PPI reps to critique reports/leaflets/papers When - Before publication Where - Involve your PPI reps at presentations/to tell their story/benefits of involvement/benefit of research to all Why – Real engagement as above-meets all the criteria and displays a real understanding of benefits

14. Researcher Checklist Define a clear role and expectations  Scope existing groups including clinics  Advertise with specified criteria  Application/interview process  Check that the person has the skills you want and any others/commitment  Provide mentorship/training/induction  Don’t forget Payment/reimbursement adhering to local policy 

15. Benefits to researchers Greater knowledge and understanding of service users Greater satisfaction and enjoyment Increased credibility Greater public trust Improved relationships with communities Partnerships to effect change

16. Benefits to PPI representatives New skills and knowledge Sense of empowerment Support and friendships Enjoyment and satisfaction Career benefits

17. PPI in Palliative Care: Dispelling the Myths Talking about end of life care is upsetting Some people do but others would like to have a say in how they are care for or to help inform future care People will be too ill at end of life to take part Not everyone is too ill to talk – be creative about your methods People will have more important things to do People keen to give something back, leave a legacy or have some control at a time when they may feel powerless We might have to change our plans if we involve people Correct We already know what the main issues are Your assumptions may be wrong and you may be surprised at what the public want or what they prioritise Previous PPI has failed so what’s the point Try a different approach or a range of approaches-use existing networks/groups PPI is too expensivePPI doesn’t have to cost a lot and in the long term will probably save money We might open a Pandora’s BoxBe honest about what you can deliver and keep people informed

18. Q & A

19. Thank you!