PLoS ONE (Jan 2019)

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

  • James Maccarthy,
  • Suzanne Guerin,
  • Anthony G Wilson,
  • Emma R Dorris

DOI
https://doi.org/10.1371/journal.pone.0216600
Journal volume & issue
Vol. 14, no. 5
p. e0216600

Abstract

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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.