1. Patient And Public Involvement (PPI) in Research Dr. Steven Blackburn NIHR Research Design Service West Midlands (Keele University Hub)

2. ........lots of terms used, some having the same meaning, some are very different...... Lay involvement User involvement PPI Public and patient involvement Participatory research Patient collaboration Consumer involvement Co-production Public participation Patient co- research Engagement

3. What do we mean by PPI? Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them INVOLVE: http://www.invo.org.uk/

4. Involvement, Participation, & Engagement Engagement Participation Involvement

5. Why do Patient and Public Involvement (PPI)? “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well”. Professor Dame Sally C. Davies, FRS, Chief Medical Officer and Chief Scientific Adviser, Department of Health, 2009.

6. What PPI adds to research? Democratic Improve quality Improve relevancy Improve acceptability Accountability Requirement of NIHR funders: Design phase (‘pre-protocol’) During the study Dissemination

7. A true story

8. PPI throughout the research cycle Prioritising research Research design Advisory / Management Data collection and analysis Dissemination and implementation Consultation Collaboration Co-production

9. Examples of PPI from Keele (1) 5 year research programme in osteoarthritis: Shaped the research grant & lay co-applicant the development Influenced the interventions Developed a patient guidebook about living with OA Developed study questionnaires Training videos for GPs Presented at conferences Co-authored a journal article (ARUK Primary Care Centre, 2006-12)

10. Examples of PPI from Keele (2) Smartphone App for the daily assessment of pain: Advisory group of 8 Help design content Provided feedback on prototype Navigation, & layout Input method (ARUK Primary Care Centre, 2014)

11. PPI in research design Shape the study design Clarify the research question and relevancy Appropriate methods (incl. intervention) Recruitment strategy Appropriate outcomes and data collection Lay summary On-going PPI Co-applicants

12. NIHR grant applications Demonstrate active PPI: During the design of the research Development of the grant application Active involvement in the proposed research: Benefits to the research Reasons for PPI Training and support for PPI Justified Realistic Achievable

13. What do reviewers look for? Clear plain English summary Specific examples of how things have changed as a result of PPI. Clear PPI plan going forward, including purpose of PPI and justification of approach. Appropriate budget. Team expertise Awareness of challenges and possible solutions. PPI activities consistent with other parts of the form. The type and appropriateness of the people providing the PPI input. Burden – e.g. is one person being asked to do everything? Training / preparation / support. How do the researchers demonstrate that the PPI input will be listened to and taken seriously?

14. PPI Good Practice Do it early Manage expectations Gratitude, dignity and respect Listen and act: “You said, we did” Training and support Feedback

15. Planning your PPI There are lots of different PPI models. Your topic area and research question will impact your approach. As with any aspect of your study, it’s important to justify your chosen approach. Ask yourself: Which aspects of this study would most benefit from the a public perspective? Who is best placed to provide that perspective? (E.g. patients, carers, advocates etc.) What are practicalities of engaging with that group? (E.g. methods of communication, format of activities, timing / location of meetings etc.) Do I have the skills to engage with that group? If not, who can help me? What costs are associated with my planned PPI activities? (There is an online cost calculator to help with this). What is in it for them?!

16. How to find people Generally falls into 4 categories: 1. Clinical contacts 2. Existing local / national PPI groups and networks 3. Topic specific charities / support groups etc. 4. Advertising opportunities to the general public e.g. online, posters, newspapers, radio etc.

17. NIHR and other resources RDS – advice, online resources and links to regional RDS, including Public Involvement Funds http://www.rds.nihr.ac.uk/patient-and-public- involvement/ People in Research – Advertise involvement opportunities http://www.peopleinresearch.org/ Topic Specific NIHR PPI networks - http://www.crncc.nihr.ac.uk/ppi/contact_us Local PPI networks / groups – Search at invoDIRECT http://www.invo.org.uk/find-out-more/invodirect/ or http://www.patient.co.uk/ http://www.rds.nihr.ac.uk/wp- content/uploads/RDS-PPI-Handbook-2014-v8- FINAL.pdf

18. Resources and contacts INVOLVE http://www.invo.org.uk/ Key INVOLVE publications - Budgeting for PPI: http://www.invo.org.uk/posttypepublication/budgeting-for-involvement/ Payments and expenses: http://www.invo.org.uk/posttypepublication/payment-for-involvement/ Briefing notes for researchers (general PPI background and advice): http://www.invo.org.uk/posttypepublication/involve-briefing-notes-for-researchers/

19. RDS Public Involvement Fund The RDS offers financial support for PPI at the grant application development stage. Simple application form Up to £500 per project Swift decision http://www.rds-wm.nihr.ac.uk

20. Public Involvement Fund: Things to Consider Reasons for PPI Demonstrate good practice How you identify and invite patients Activities and tasks Impact of PPI Well costed

21. Public Involvement Fund Process Register with RDS Apply early http://www.rds-wm.nihr.ac.uk Decision within 10 daysEvaluation report at 3 months

22. Steven Blackburn Lead Advisor for PPI, RDS West Midlands s.blackburn@keele.ac.uk primarycare.rds@keele.ac.uk

23. ANY QUESTIONS?