Meaningful patient and public involvement to advance healthcare equity, quality and accessibility

Abstract

Abstract Background A large part of public health is promoting healthcare equity, quality and accessibility. Patient and public involvement (PPI) is a powerful tool to support this goal. It can lead to a richer understanding of public health research topics, improve data quality and analysis, increase trust in and dissemination of research findings, and ultimately achieve health services that are useful, useable and desirable. However, this all relies on PPI being conducted in a meaningful, respectful and inclusive way. Guidance is available on how to conduct, report and evaluate PPI activities. However, evaluative data are often brief, narrative descriptions, which reflects the lack of robust tools specifically developed to assess PPI. The purpose of this study was to develop and pilot tools to objectively assess PPI in the context of research project meetings. Methods PPI and group dynamics literature was used to guide the construction of an observation protocol and questionnaire. The research tools were piloted within a randomised trial of a community intervention for refugee children reporting symptoms of posttraumatic stress. Results The Active Involvement of Users in Research Observation Schedule is a semi-structured observation protocol, which consists of 12 observable behaviours relating to the interpersonal relations between researchers and PPI advisors; the nature of advisor contributions; and how the advisors guide research development. Each category consists of positive and negative behaviours. There is an accompanying paper-based assessment form that allows attendees to independently and anonymously grade the meeting on a list of items that correspond to those on the observation pro-forma. Preliminary inter-rater reliability for the observation protocol is good (ICC=0.833; 95% CI: 0.569-0.947). Conclusions Although the research tools require further refinement and validation, the methodological approach offers a promising, rigorous way to evaluate PPI. Key messages A large part of public health is promoting healthcare equity, quality and accessibility. Patient and public involvement (PPI) is a powerful tool to support this goal. The Active Involvement of Users in Research Observation Schedule and Questionnaire offer a promising, rigorous way to evaluate PPI and promote meaningful involvement to advance public health research.