1. Patient & Public Involvement in research Support for Researchers Working with Public & Patient Groups Dr Susan Hrisos, Senior Research Associate, IHS Dr Lynne Corner, FMS Director of Engagement May 2016

2. Format of session Rationale for Patient & Public Involvement in Research National context & the NIHR Breaking Boundaries review Examples of ‘doing’ PPI Interactive session – Small group work

3. First – a little bit about you … Who you are What you are up to What you hope to get out of today

4. Patient & Public Involvement (PPI) Huge increase in the involvement of patients in improving their health & healthcare in recent decades – Examples: shared decision making; self-management of chronic illness; development of healthcare policy, clinical guidelines & patient literature Evidence of benefit from involvement in healthcare: – active participation during consultations is associated with better health outcomes (Kaplan 1989; Kaplan 1996) – increased involvement improves aspects of medical care (Atkin 1998; Liaw 1996, Bibowski 2001) – involvement improves patient safety (Hrisos & Thomson, 2016 in press; 2013)

5. PPI in improving Research Historically patients & public have not had a large influence on research prioritisation or commissioning, and have not been involved in the research process Research can seem irrelevant to patient & public needs Dissemination of findings to take too long

6. Patient & Public Involvement in Research  PPI in research has become an important part of research activity & is supported by government & health policy  NHS Research Governance Framework (2005): patients should be “active partners” in the research process  http://www.nihr.ac.uk/policy-and-standards/research-governance-framework.htm http://www.nihr.ac.uk/policy-and-standards/research-governance-framework.htm  https://www.gov.uk/government/publications/research-governance-framework-for-health-and- social-care-second-edition https://www.gov.uk/government/publications/research-governance-framework-for-health-and- social-care-second-edition ‘2.2.6 Relevant service users and carers or their representative groups should be involved wherever possible in the design, conduct, analysis and reporting of research. Social care research has a long tradition of involving them. INVOLVE, formerly Consumers in NHS Research, has established the principle that major advisory bodies in NHS R&D programmes should normally have at least two consumer representatives.’

7. Patient & Public Involvement in Research  INVOLVE (http://www.invo.org.uk/)http://www.invo.org.uk/  Unique national advisory group that promotes patient & public involvement in research  Expectation of PPI contribution that goes beyond “tokenism” ‒i.e. To have a more meaningful & identifiable role, e.g. in the design, conduct, analysis and reporting of research Tokenism Is OUT!

8. INVOLVE Unique national advisory group that promotes consumer involvement in research – Supported by NIHR Central Commissioning Facility “Involvement” = an active partnership between public & researchers in the research process rather than the use of people as research “subjects”. (INVOLVE definition. http://www.invo.org.uk/)http://www.invo.org.uk/ – rationale for PPI is the production of research that will be more relevant to people & more likely to be used reflect the needs & views of the public be more likely to produce results that can be used to improve practice and social care – Promotes involvement in all aspects of the research process, including Design of questionnaires & topic guides Preparing patient information Conducting interviews & focus groups Analysing transcripts

9. Research Cycle INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/ http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/

10. http://www.invo.org.uk/ Extensive support & guidance:

11. 'Every day patients and the public go the extra mile to help make UK research happen. They help decide research priorities, shape its design and spread the word about its importance to fellow citizens. The public have already made a huge difference to NHS research and the work of the NIHR. We must match their commitment with an equal resolve to involve voices from all parts of the community in all that we do'. Simon Denegri National Director for Patients and the Public in Research​ and Chair of INVOLVE ‘Going the Extra Mile’: a strategic review of public involvement in NIHR: March 2015

13. Examples of ‘doing’ PPI www.thinksafe.care

14. NIHR Patient Safety Programme: “Improving patient safety through the involvement of patients” (Programme Lead: Prof. John Wright. Academic Lead: Prof Ian Watt) Project 1: Bradford  Patient measure of organisational safety – Lead: Prof. Rebecca Lawton Project 2: Bradford  Patient error reporting system – Lead: Prof. Gerry Armitage Project 4: Newcastle  Direct patient intervention to reduce their risk of harm – Lead: Prof. Richard Thomson Project 3: Leeds  Patient-centred training programme – Lead: Prof Vikram Jha Core focus: Development of user- informed approaches to improving patient safety.

15. Example 1: PPI Steering Panel Annual Steering Seminar 2010 Programme research Day 2012 Research stream within PS Conference 2013 Scrutiny committee Patient Panel meeting 6 monthly 3monthly informal meetings Website & email fora Newsletter Scientific Steering YQSR group meeting 3 monthly Progress meeting 3 monthly Project 4 team meeting 2 monthly Project 1 team meeting 2 monthly PPI ‘pre-team meeting’ meeting Ad Hoc interim PPI meetings ‘Business ‘emails ‘Maintenance’ emails Dissemination activities Panel Chairs Project 4 team meeting 2 monthly Project 4 team meeting 2 monthly

16. Example 2: Conducting Research Assistance with patient recruitment for interview Participant observation in a patient focus group Analysis of focus group transcript Co-facilitated a creative thinking workshop with PPI peers Piloted patient focussed materials & data collection measures Development & design of ThinkSAFE intervention materials

17. Example 3: Dissemination Local & national dissemination of study & developments

21. Interactive Session Research Involvement

22. Your seedling research idea is awaiting “involvement nitrate” Task #1 (10 mins): As a group … Discuss your research projects. Identify who might be your key stakeholders. Think about … Who do you need to involve & when? Where are they in the bigger picture? Why are they important? Place your stakeholders on the diagram Task 1: Small group exercise #1

23. Task Two (5- 10mins): Imagine that you already have a “Dave” on your research team … What might his role be in enhancing stakeholder engagement & involvement in your research? How can he help feed your research with their perspective ? Place “Dave” on your diagram where you think he has a role to play. Write down what this role is at this place. Feedback to full group (2-3mins) Task 2: Small group exercise #2

24. Research Cycle INVOLVE http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/ http://www.invo.org.uk/posttyperesource/where-and-how-to-involve-in-the-research-cycle/

25. What might involvement look like at the different stages of the research cycle? – What research activities might Dave contribute to? – Who else might you involve? – Why involve - what impacts do you anticipate? Prepare feedback on: Proposed PPI involvement at different stages Anticipated impact relative to proposed involvement Feedback to full group (2-3mins) In your small groups discuss …

26. Got an idea for a session? contact helen.atkinson@ncl.ac.uk

27. Access to guidance & other resources https://internal.ncl.ac.uk/medical/engagement/index.htm

29. Other resources

30. Thank you!