The public and patient involvement imperative in Ireland: Building on policy drivers

Abstract

What can we learn from the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions? Depending on region and context, the terminology and heritage of involvement in research vary. In this paper, we draw on global traditions to explore dominant themes and key considerations and critiques pertaining to PPI in order to inform a PPI culture shift in Ireland. We then describe the heritage of PPI in Ireland and present the case for combining methodological imperatives with policy drivers to support and encourage meaningful involvement. Specifically, we propose that PPI can be enriched by the theory and processes of participatory health research (PHR); and that implementation requires concurrent capacity building. We conclude with a call for Irish researchers (authors of this paper included) to consider the conceptual complexities and nuances of a participatory approach to build on the policy imperatives driving PPI and to contribute to the international evidence base and research culture. Specifically, we call for Irish health researchers and funders to consider and reflect on: (1) the rich literature of PHR as a resource for enacting meaningful PPI; (2) the roots and origins of varying participatory health research methods; (3) how community/patient groups can lead health research; and (4) co-learning and partnership synergy to create space for both academic and community expertise; and (5) the importance of using standardized reporting tools.

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review

“…A lack of and consistency in reporting more generally is also warranted, underscored in this review by a clear lack of discussion pertaining to facilitators, benefits, barriers and ethical issues to be extracted from the captured literature. This is not a new issue, and a call for researchers to consider reporting in a consistent way was highlighted by Gilfoyle et al 5. Researchers should strongly consider utilising frameworks like the ‘Guidance for Reporting Involvement of Patients and the Public 2’ (GRIPP2),89 which would help address this gap.…”

“…PPI is recognised as a moral, methodological and policy imperative, and has become mandated across many jurisdictions and funding bodies globally, driving a rich, diverse and international evidence base 1–4. Specifically, evidence shows that involving patients and the public throughout the research process (ie, from research conceptualisation to dissemination) improves the research process and outcomes, such as the relevancy, credibility and effectiveness of knowledge being produced 5–8. For example, a systematic review by Baldwin et al 7 evaluated the impact of involving older adults in health and social care research as coresearchers and found an array of benefits for the academic researchers (eg, new learning from coresearchers experiences and perspectives), older adult coresearchers (eg, gaining new knowledge and skills), as well as benefits for the research quality and impact (eg, richer data).…”

“… 1–4 Specifically, evidence shows that involving patients and the public throughout the research process (ie, from research conceptualisation to dissemination) improves the research process and outcomes, such as the relevancy, credibility and effectiveness of knowledge being produced. 5–8 For example, a systematic review by Baldwin et al 7 evaluated the impact of involving older adults in health and social care research as coresearchers and found an array of benefits for the academic researchers (eg, new learning from coresearchers experiences and perspectives), older adult coresearchers (eg, gaining new knowledge and skills), as well as benefits for the research quality and impact (eg, richer data). Another systematic review and meta-analysis by Crocker et al 9 found that PPI in clinical trials was beneficial for both enrolment and retention rates in the trial.…”

Understanding the evolution of trust in a participatory health research partnership: A qualitative study

“…PPI in Ireland has been a focal priority for funders and health researchers since 2014 28 . This priority sparked capacity‐building initiatives, including the launch of the PPI Ignite Award in 2017, where five universities across Ireland were funded as individual PPI Ignite Teams by the Irish Health Research Board (HRB) and Irish Research Council (IRC).…”

“…PPI in Ireland has been a focal priority for funders and health researchers since 2014. 28 This priority sparked capacity‐building initiatives, including the launch of the PPI Ignite Award in 2017, where five universities across Ireland were funded as individual PPI Ignite Teams by the Irish Health Research Board (HRB) and Irish Research Council (IRC). Expanding on this progress, HRB and IRC funded the national PPI Ignite Network (March 2021–2026), ‘aim[ing] to provide a shared voice for PPI across Ireland, aiming to change the research culture, and an important contributor to improving health outcomes for the public’.…”