Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

Abstract

Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

Applying Patient and Public Involvement in preclinical research: A co‐created scoping review

“…Two reviewers P. C. and M. F. conducted data extraction using a data extraction form developed in accordance with the JBI guidelines 14 and the study protocol. 12 The following information was extracted for each included study: author(s); year; title; country of origin; the scientific discipline/context of the study; who took part in the PPI component (PPI Contributors); the reason for conducting PPI (PPI Rationale); what researchers sought to accomplish with PPI (Aims of PPI); which PPI approach was used (PPI Format); how PPI was implemented (PPI Methods); stages of implementation according to NIHR 1 ; benefits associated with PPI; challenges associated with PPI; impact of PPI on study; if/how PPI was evaluated; elements with potential application within our preclinical PPI project. …”

“…Three members of the PPI Advisory Panel are PPI contributors and were involved in the project from the beginning, including project planning and protocol development stages. 12 Completed data extraction forms were circulated to PPI Advisory Panel members in advance of a scheduled meeting. The extracted data were discussed in terms of themes/trends identified by the patient partners and other panel members, aspects relevant to the spinal cord repair project, and aspects relevant to preclinical PPI more generally.…”

“…Panel members agreed that a scoping review would be useful, and collaboratively developed a protocol for the study. 12 In the intervening period, another scoping review was published that explored patient engagement in preclinical laboratory research. However, this study had a more general aim and broader definition, including engagement and involvement activities, and included secondary as well as primary literature.…”

“…The research question for this scoping review study was how do researchers incorporate PPI in preclinical research? 12 The aims of this review were to identify and map the current empirical literature on PPI in preclinical research to identify why researchers used PPI, the volume and range of approaches used, the benefits and challenges encountered, the impacts they reported and potential applications for our own PPI strategy. We planned to synthesize the initial findings collectively as a group comprised of PPI Advisory Panel members to ensure that the findings reflected the perspectives of the entire team.…”

Perspectives of Researchers and Clinicians on Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: An Interview Study

“…Clinicians emphasised that it would be important to clearly communicate the preliminary nature of research findings, as they believed people with SCI might develop high expectations for a cure from early research findings. This contrasts with views expressed by people with SCI, who reported that being involved in PPI could have the opposite effect, that learning more about research would reduce their hope for a cure 24 . The importance of developing strong relationships noted by study participants is generally accepted to be essential for successful PPI but can be challenging to achieve 23, 25 , and has formed the basis of a model for PPI in SCI 13 .…”