Public involvement in health and social care research: the values we bring to working together

1. Public involvement in health and social care research: the values we bring to working together Ann Jacoby on behalf of The Public Involvement Impact Assessment Framework (PiiAF) Study Group (PI, Prof Jennie Popay)

2. Background • Considerable momentum for public involvement (PI) in UK health and social care research • Endorsement of importance by research funders • Examination of PI impacts remains limited • Ethical mandate for PI, so no need for evidence • PI impacts difficult to assess • But, evidence important to ensure integrity, maximise benefits, avoid harms and justify costs of PI • PiiAF Study aimed to developframework and guidance to support PI implementation and assessment of PI impacts

3. Exploring values underpinningPI in HSCR • Work presented here aimed to inform PiiAF Framework and Guidance • Justification - important to understand: • Role of underpinning values for implementation and impacts of PI • Areas of conflict around underpinning values, when different stakeholders work together • Question of whether conflicts be resolved • Focus was on 3 ‘value clusters’ from literature review: • Normative • Substantive • Process-related

4. Definition of our value clusters • Normative • Involvement as an end in itself (ie. publics have a right to be involved in research) • Substantive • Consequential arguments (ie. PI improves science of research, eg. quality, relevance) • Process-related • Values around good involvement (ie. equality, genuine partnership)

5. Delphi Study: aims and methods • Aims: • to explore values around and perceivedimpactsof PI • to identify areas of consensus and conflict • to explore possible conflict resolution • ‘Modified’ Delphi - as no attempt to force ‘consensus’ • Round 1 quantitative questions - consensus defined as: • Critical (endorsement by 70% or more) • Clear (endorsement by 60% or more) • Lack of consensuswithin/acrossrespondent groups explored in Round 2 • Thematic analysis of qualitative material

6. Content of survey questionnaires Round 1 questionnaire: Round 2 questionnaire: Matters if different stakeholders hold views which others consider biased? How can the tensions about the purposes of PI be resolved? Are there any circumstances where PI is inappropriate; and why? Key thing that needs to happen to make PI more than just tokenistic? How important is it to assess impacts and outcomes? What kinds of knowledge should underpin research? What are purpose(s) of PI? What levels of involvement appropriate? What factors contribute to effectiveness of PI? What potential impacts/outcomes?

7. Survey response rates Purposive sample from diverse settings Round 2 SAMPLE: Participants who completed the R1 were invited to participate in R2 Invited n= 315; Responded n= 231; RR 73% (of 43%) • Round 1 SAMPLE: • Invited n=740 • Responded n=318 • RR=43% • Self-selected into ‘stakeholder’ groups: • Clinical academic (20%), • Non-clinical academic (28%), • Member of the public (17%), • Research manager/funder/ commissioner (24%), • Multiple roles (11%)

8. Research experience by stakeholder group

9. Round 1: Kinds of knowledge (Response option format = 5-point scale ‘strongly agree’ to ‘strongly disagree’) [5-point response = strongly agree to strongly disagree]

10. Summary of Round 1 findings Consensus for: Critical consensus for: Public has unique knowledge / expertise Public knowledge complementary/ should be equally valued PI can influence uses of research Public should be involved in publicly funded research Public have right to say what/how research is undertaken PI ensures research is more ethical • 4/7 statements re. kinds of knowledge to inform research • 6/7 statements re. purpose • 6/7 statements re. levels of involvement • 9/21 statements re. factors acting as barriers/facilitators • 10/13 statements re. impacts and outcomes

11. Summary of Round 1 findings Lack of consensus about kinds of knowledge: Lack of consensus about PI impacts/outcomes: PI improves research quality/relevance PI increases likely use of research findings Assessing PI impacts is methodologically problematic • Public likely biased • Professionals likely biased • Professionals can represent user views And agreement that: • Tensions between public and researchers about: • Purpose of research • What constitutes good research

12. Round 2: Does stakeholder group bias matter? • Endorsed by 43% cross all stakeholder groups • Range endorsing across stakeholder groups 29% (funders) - 59% (clinical academics) • Common themes: • All research/research actors biased • Bias needs to be acknowledged • Importance of managing diverse perspectives • Discussion of bias a ‘red herring’ since all biased • Issue of power more critical – who holds power to enforce their viewpoint.

13. Round 2: How important is it to assess PI impacts? • Very 58% • Fairly 31% • Slightly 7% • Not at all 4% • Range of %s across stakeholder groups endorsing as ‘very important’ 40% (multiple role) - 75% (public) • Justifications for assessing impacts: • Good practice • For ethical reasons • Need to justify costs • Funding based on it • To improve quality of PI • To convince sceptics • To monitor possible associated harms

14. Round 2: Other key findings • Majority agreed tensions between stakeholders resolvable • Tension inevitable, need to be managed rather than resolved • Need for guidelines to manage tensions • High agreement public can be involved in all/any research • But, more problematic/less appropriate in basic science? • High agreement about most important barriers and facilitators • Attitudes of researchers • Level of public’s research experience /knowledge • Perceived importance of PI • Strong endorsement of PI facilitators as well-managed opposites of barriers • Strong endorsement of tokenism as self-fulfilling prophecy

15. The tokenism cycle Suggested solutions: • Provide clear guidance on meaningful PI/models of good practice • Redress power imbalances • Provide appropriate education/training/support • Define measurable standards • Address accountability through monitoring • Provide funding for PI early in research process • Demonstrate added value through examples/body of evidence

16. Conclusions from Delphi Study • High levels of consensus highlight extent to which PI already embedded in HSCR • But areas of conflict also identified, suggesting continuing need for culture change • Lack of understanding of ‘added value’ of PI? • Current PI policy encourages tokenism? • Need for ‘best practice’ standards; also flexible and ‘fit for purpose’ approaches

17. And finally . . . • Delphi Study data inform PiiAF Framework & Guidance • Forthcoming publications re. ‘values we bring to working together’ • Gradinger et al, Health Expectations, in press • Snape et al, BMJ Open, in press • Further information re. Delphi Study and PiiAF obtainable from: ajacoby@liv.ac.uk; j.popay@lancaster.acuk; m.collins@lancaster.ac.uk http://piiaf.org.uk