Facilitating good practice for public and patient involvement (PPI) in translational health research.
James Maccarthy, Suzanne Guerin, A. Gerry Wilson and Emma R. Dorris
UCD Centre for Arthritis Research, UCD Conway Institute UCD School of Psychology, Dublin 4, Ireland
Involving patients in research broadens a researcher’s field of influence, generating novel ideas, challenges and discussions. Basic, translational and preclinical research (hereto translational) is integral to the progression of innovative healthcare. These are not patient-facing disciplines and implementing meaningful PPI can be a serious challenge in the absence of well-defined support structures.
PPI is being incorporated as part of standard research practice. As with all new practices in research, there is a need to refine and improve its use. Our aim is to develop standard PPI evaluation tools that can effectively be applied in translational and non-patient-facing research disciplines.
A discussion forum (n=16) and thematic analysis identified key challenge areas of implementing PPI for translational researchers. A literature review was used to define questions for a patient-involvement satisfaction questionnaire. Patient partners (n=12) reviewed, ranked and assessed the questionnaire for language accessibility. Pilot study of the questionnaire (n=60) for face, discriminate and internal validity, with factor analysis to determine substructure. The quantitative analysis informed by the qualitative feedback refined the questionnaire. To adapt the questionnaire to a structure familiar to basic researchers, we developed a flagging system based upon that used in standard quality control assays and a PPI reporting grade based on the risk matrix.
Key challenges implementing PPI: (1) Barriers- institutional challenges (2) Worries- personal challenges (3) Concerns- research challenges. In response a personal “PPI Ready” planning canvas for researchers was developed. For contemporaneous evaluation of PPI, a psychometric questionnaire for patient partner satisfaction and an open source tool for its evaluation was developed. The questionnaire measures information, procedural and quality assessment. Combined with the open source evaluation tool, researchers are notified if PPI is unsatisfactory in any one of these areas. The open source tool is easy to use and adapts a psychometric test into a format familiar to basic scientists. Designed to be used iteratively across a research project, it provides a simple reporting grade to document satisfaction trend over the research lifecycle.
We have developed a tool for translational health researchers to facilitate the implementation and evaluation of PPI during a research project.