1. 01/10/2016 Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by an NIHR Research Design Service Research Design Service Yorkshire and the Humber (RDS YH) Dr Jonathan Boote, Research Fellow, University of Sheffield; Daniel Beever, Communication and Data Manager, RDS YH Consolidating the evidence base for public involvement in health services research: PENCLAHRC PPI conference, Exeter, 13-15 November 2013

2. The full team To acknowledge other members of the RDS YH involved in this work: Wendy Baird, RDS YH Director Yvonne Birks, RDS YH Deputy Director Maureen Twiddy, Research Fellow, RDS YH Clare Clarke, PPI administrator

3. Introduction Morally right and good practice for the public to be offered payment for active involvement in research INVOLVE offers guidance to researchers on suggested payment rates Payment for involvement in research conduct can be costed into a study grant It has historically been hard for researchers to access funds to offer payment for the public to be involved in research design and grant development

4. Key quote from the literature From: Staniszewska S, Jones N, Newburn M, Marshall S. User involvement in the development of research bid: barriers, enablers and impacts. Health Expectations, 2007; 10: 173–183. If user involvement remains an international policy imperative with little if any support at the vital stage of bid development, policy- makers, service user organizations, researchers, health service providers and commissioners will need to recognize the limited nature of involvement that may result and the impact this would have on the evidence base. Researchers will need to recognize the resource implications of involvement at this point, and user groups will need to decide whether to participate when there is the greatest chance of influencing research but little or no funding (p. 175).

5. Background Organisations with a remit to support PPI are now providing financial support to researchers at the design stage Most NIHR Research Design Services operate a formal PPI bursary scheme to finance PPI activities during grant development NIHR RDS Yorkshire and Humber has operated its PPI bursary scheme since 2009 This presentation: –Describes the RDS YH Public Involvement in Grant Applications Funding Award –Provides examples of its successful use –Presents the findings of an evaluation of the scheme

6. The RDS YH PPI funding scheme Description of the RDS YH Public Involvement in Grant Applications Funding Award: Run on a call basis, with four calls per year Up to £500 per applicant is available Only one application is allowed per grant & per researcher, per call Members of the RDS YH PPI Forum review applications Successful applicants required to write a post-award report on how the award was used

7. Use of the scheme 2009-2012 Some headline figures… Up to end of 2012, 80 applications received 45 awards made (totalling nearly £19,000) –These contributed to 27 applications, 11 were successful (totalling over £7.5 million) NIHR Research for Patient Benefit was the most targeted funding scheme (n=17) Main types of PPI costs requested were payment for time (n=37) and Out- of-pocket expenses (travel and subsistence) (n=42)

8. Involvement activities funded The RDS YH does not specify a preferred model/approach to PPI in grant development Applicants intended to involve the public in numerous ways: –Consultation event/focus group/workshop (n=28) –Attendance at research planning meetings (n=9) –Establishment of a PPI panel (n=4) –As a co-applicant (n=3) –One-to-one consultation (consultation interviews) (n=1)

9. Issues that researchers wanted PPI input into Most common: Feasibility of proposed data collection process and procedures (n=13) Planned randomisation, recruitment and consent process (n=13) Data collection material (n=12) Appropriateness of intervention to be researched (n=10) Choice of outcomes and proposed outcome measures (n=10)

10. A case example of usage (1) Grant used to hold consultation event to support a proposed RCT of an intervention to reduce seasonal exacerbations in childhood asthma Consultation event held with children with asthma and their parents Attendees were asked their views about the wording of the proposed intervention (a letter from the GP) –Letter revised to include a sentence in large type: ‘Please read this important letter relating to your child’s asthma’ –Attendees supported the letter being addressed to the parent rather than the child Parents at the event were invited to be members of the TSC Children at the event selected a logo for the study The event was written up as a University of Sheffield report The study was funded by NIHR Health Technology AssessmentNIHR Health Technology Assessment

11. A case example of usage (2) Grant used to establish a panel panel of mothers with experience of pre-term birth, to advise on the development of research studies on the topic First meeting of the panel – presentations about the grants in development and about the role of PPI in research Panel gave feedback to the qualitative researcher Funding to develop these devices awarded from the MRC Developmental Pathway Funding Scheme and from NIHR Invention for Innovation Stage 2 PPI panel provide regular input into these studies

12. Evaluation of the funding award All 45 successful applicants sent a questionnaire in 2012 Completed questionnaires received from 25 researchers (56%) Only one response was received from a member of the public Covered three main areas: –Value of public input –Difficulties encountered –Reflections & suggestions

13. Did the public improve the grant? Of the 19 respondents who had completed their PPI activities, 17 thought that the public demonstrably improved their application –More confidence that [the research] was designed around the clients we were going to interview. Confidence in our lay summary and also our decision making about data collection. –We could justify some aspects of the design with reference to [their] suggestions 2 researchers were not sure or didn’t think that the public contributed that much: –They offered few suggestions or modifications. The grant was not awarded

14. Difficulties encountered Some researchers reported the following difficulties: Recruitment was difficult. We only planned a small focus group discussion with six participants. We had six people signed up, but only four turned up on the day. The main difficulty was that one service user in the reference group wanted to talk in detail about their problems and therefore use it as a therapeutic session Finding appropriate patients. Consulting people with dementia in group sessions – while practicable – was problematic, in terms of ensuring that each person had an opportunity to contribute in a detailed way.

15. Views on the award scheme We asked respondents for their reflections on the RDS YH award scheme: It encourages researchers to spend quality time considering this issue Small pots of cash are crucial to reduce the cost to the academics to deliver meaningful PPI prior to receiving grants. Public involvement in grant applications is essential and people’s time and expertise as service users should be paid for so a small amount of funding through this grant is helpful. It also sends an important positive message about the importance of PPI. One researcher offered this important suggestion for improving the scheme: Insist that recipient universities have admin systems in place to allow payments to be made to the public in a variety of ways – perhaps by drawing up a list of ‘must have’ methods, including cash to deal with taxi fares and actual payment at the rate per person monies were awarded

16. Discussion points (1) Consultative models of public involvement in research design were dominant. Collaborative approaches were rare, and no applications from service user organisations were received A call-based system favours researchers applying for researcher-led rather than commissioner-led funding calls –This has led to a new fast track application process The evaluation received a poor response from the public –This has led to a new online portal for the public to record their experiences of involvement How do we evaluate the effectiveness of a funding scheme to support public involvement? –Outlay v. grant capture is crude and potentially misleading –PPI could lead to grants not being submitted –Good (financially supported) PPI may not on its own lead to a grant application being supported

17. Discussion points (2) Applicants from a range of NHS trusts and universities are able to apply for the scheme. –The RDS YH does not specify payment/expenses rates because the award has to be administered locally within organisations that have their own payments/rewards policies –This inevitably leads to a range of payment rates across the region Applicants to the scheme are now advised to liaise with their finance and human resources departments, to ascertain whether their organization has a payments and expenses policy for work undertaken with and by service users, and to base their costings on these rates Should/could RDSs have set payment rates for activities funded through their PPI funding awards?

18. Acknowledgements and disclaimer The RDS YH would like to thank: Those researchers in the Yorkshire and Humber region who applied to the RDS YH for a Public Involvement in Grant Applications Funding Award The members of the public who participated in involvement activities funded by these awards The researchers and members of the public who took part in the evaluation of the scheme The members of the NIHR RDS YH’s PPI Forum who reviewed applications to this funding scheme All the authors are supported, at least in part, by the NIHR RDS YH. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

19. Further reading Two recent papers explore PPI funding schemes supported by a local NHS Research Design Service Boote J, Twiddy M, Baird W, Birks Y, Clarke C, Beever D. Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS). Health Expectations. Early View (online version). DOI: 10.1111/hex.12130 Walker D-M, Pandya Wood R. Can research development bursaries for patient and public involvement have a positive impact on grant applications? A UK-based, small-scale service evaluation. Health Expectations. Early view (online version). DOI: 10.1111/hex.12127