Aitken et al 2019 International Journal of Population Data Science 4:1
Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research
This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution.
Brighton et al. 2018 Research Involvement and Engagement 4:14
Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research
Authors developed an online forum for PPI In this study, they explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. However, they concluded that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact.
Buck et al 2016 BMJ Open 4:12.
From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials
This paper describes how plans for PPI were implemented within clinical trials and identified the challenges and lessons learnt by research teams. Conclusions were that engaging PPI contributors early and ensuring ongoing clarity about their activities, roles and goals, is crucial to PPI’s success. Funders, reviewers and regulators should recognise the value of preapplication PPI and allocate further resources to it.
Brett et al 2014 The Patient: patient-centred outcomes research 7: 387.
A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities
This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research. Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community.
Crocker et al 2018 BMJ 363:k4738
Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis
This review investigated the impact of patient and public involvement (PPI) on rates of enrolment and retention in clinical trials and explore how this varies with the context and nature of PPI. The findings added weight to the case for PPI in clinical trials by indicating that it is likely to improve enrolment of participants, especially if it includes people with lived experience of the health condition under study.
Domecq et al. 2014 BMC Health Services Research 14:89
Patient engagement in research: a systematic review
This systematic review aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? 142 studies that described a spectrum of engagement were found. Authors concluded that patient engagement in healthcare research is feasible, but engagement comes at a cost and can become tokenistic.
Hill et al. 2018 Research Involvement and Engagement 4:33
Meet the researchers: an alternative method of engaging patients with research in mesothelioma
This article describes a method of public engagement called “Meet the Researchers” that enables people to hear about current trends in research face to face with the researchers planning or conducting it. “Meet the Researchers” was designed to promote discussion and allow questions to be asked in a relaxed and informal way, in small groups, which is less daunting than asking questions in front of a conference audience. The method was tested with patients and was rated very highly by them in the feedback they gave.
Marks et al 2018 Research Involvement and Engagement 4:36
Reflections and experiences of a co-researcher involved in a renal research study
The aims of this paper were to share one first time co-researcher’s reflections on the impact of PPI within a mixed-methods (non-clinical trial) renal research study. The reflections, voices and views of those undertaking PPI has been largely under-represented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment.
Patient and public involvement in research – Enabling meaningful contributions
Report published by the RAND Europe
RAND Europe was commissioned by The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge to conduct a rapid review of the evidence base on PPI in research. This report reflects on what we know and on knowledge gaps. It aims to help inform THIS Institute’s efforts to establish and implement an effective PPI strategy. It should also be of relevance to other organisations and initiatives seeking to involve patients and the public in research in a meaningful and effective way.
We are continuing looking for those that are relevant to patient involvement; including those that outline the impact that patient have had on the research.