Facilitating public and patient involvement in basic and preclinical health research.

James Maccarthy,Emma R Dorris,Suzanne Guerin,Anthony G Wilson,Jon Salsberg

doi:10.1371/journal.pone.0216600

Abstract

Involving patients in research broadens a researcher’s field of influence and may generate novel ideas. Preclinical research is integral to the progression of innovative healthcare. These are not patient-facing disciplines and implementing meaningful public and patient involvement (PPI) can be a challenge. A discussion forum and thematic analysis identified key challenges of implementing public and patient involvement for preclinical researchers. In response we developed a “PPI Ready” planning canvas. For contemporaneous evaluation of public and patient involvement, a psychometric questionnaire and an open source tool for its evaluation were developed. The questionnaire measures information, procedural and quality assessment. Combined with the open source evaluation tool, researchers are notified if public and patient involvement is unsatisfactory in any of these areas. The tool is easy to use and adapts a psychometric test into a format familiar to preclinical scientists. Designed to be used iteratively across a research project, it provides a simple reporting grade to document satisfaction trend over the research lifecycle.

Highlights

Involving patients or the interested public in research broadens a researcher’s field of influence, generating novel ideas, challenges and discussions
We use the INVOLVE definition of public and patient involvement (PPI), whereby PPI in research is defined as research carried out with or by patients and those who have experience of a condition, rather than for, to, or about them[7]
In response to the preclinical researcher views on implementing PPI, we proposed that reflecting on the main theoretical challenges for implementing PPI, which stem from the uncertain boundaries of the concept, in advance of starting a research project would facilitate downstream success for PPI

Summary

Introduction

Involving patients or the interested public in research broadens a researcher’s field of influence, generating novel ideas, challenges and discussions. Preclinical research is not a traditionally patient-facing discipline and implementing meaningful public and patient involvement (PPI) can be a serious challenge in the absence of well-defined support structures. In healthcare, patients and the interested public are sought as partners in study design and governance. This trend is growing due to an increasing requirement by national, international and charitable funding bodies to include PPI as a condition of funding[2,3,4,5,6].

Results

Discussion

Conclusion