Abstract
Funders of health research internationally are adopting the concept of involving the public and patients into decision making within their organisation and/or within funded research initiatives (Public and Patient Involvement, PPI). To what extent and through what mechanisms a health research funder should do this has become a pertinent business question. This project was undertaken in 2016 to provide recommendations to the Health Research Board about which potential PPI interventions to prioritise.
The project explored the main concepts around PPI and analysed the international PPI experience in three countries with well-established PPI supports (UK, USA and Canada), followed by mapping of the emerging Irish PPI landscape. This information fed into the design of a survey targeting two audiences, health researchers and members of the public/patients, exploring what the HRB should so to support PPI. A total of 391 people responded to the survey, with 242 completing it.
Survey results showed that researchers had a clear preference for the HRB to provide practical support for their PPI endeavours. Awareness raising was seen as important, which is corroborated by the observation that not all respondents appear to share the same definition of PPI, a phenomenon observed internationally. Matchmaking between researchers and PPI contributors was of medium importance, as was the option for the HRB to emphasise PPI throughout award selection and management. Training needs for researchers and for PPI contributors scored medium-low. The least favoured option was to include public reviewers into selection panels for applications.
Two thirds of responding researchers claimed to have previously employed PPI within their research. This appears high and might reflect a self-selected sample and some ambiguity regarding the definition of PPI. 89% of researchers were satisfied or very satisfied with previous PPI experiences, and virtually all (147/148) intended to integrate PPI activities into their research in the future, providing a strong foundation for PPI interventions.
Main messages from the public/patient survey included a mismatch between research carried out and research seen as important by respondents. This has been documented internationally and provides a challenge for funders. Respondents indicated interest in activities linked to individual projects such as proofreading patient materials and inputting into the design of the research protocol. Half of the respondents considered working with a research funder to review the PPI aspect of applications, indicating that this would be a feasible option for the HRB. There was a high willingness to be involved in research in the future, and a mostly positive reflection on previous PPI experience, although not as positive as the researchers’ assessment.
The main recommendation arising for the HRB is to set out a 4-year plan with two parts: planned funding initiatives to implement the recommendations, and a planned gradual change in ways of working to strengthen the PPI aspect in applications and award management.
Aim
The research question was “which potential PPI interventions should the HRB prioritise”? This is based on the assumption that the HRB will engage in this area more systematically, as indicated in its strategy, and that choices will have to be made about where and how to deploy resources. It recognises that developing PPI in Ireland will be a journey over many years, which the HRB hopes to take together with researchers and the public rather than imposing requirements on researchers.
Intended Impact of the Study
Development of a systems-approach to PPI
New funding scheme for organisational support of PPI (PPI Ignite) with a mandate for policy and culture change as well as practical support, since moved into a national PPI Ignite Network
Emphasis on PPI in call guidance notes and application forms
Stepwise approach to introducing public review of PPI in applications, as feedback to applicants for the first three years and integrated into selection process thereafter
Ensuring award budgets include PPI costs
Follow on survey in 2021 (closing 1 July 2021)
Project Lead
Research Area(s)
Study Design(s)
Data Collection Method(s)
Participant(s)
Status
Stage
Study Funding/Support
Dissemination Activity/Activities
Other(s): Summary on HRB website since taken down, submitted as MSc Business Practice thesis