Consumer engagement in living evidence “a beautiful opportunity”: International qualitative study with patients and methodologists

Objective

We aimed to explore the opportunities, challenges and practical strategies for consumer engagement (i.e., patient and public involvement) in living evidence (systematic reviews, guidelines and health technology assessments that are continually updated with the latest evidence).

Study Design and Setting

In this international qualitative study, methodologists (producers of systematic reviewers, guidelines and health technology assessments) with an interest in living evidence, and consumers (patients, informal carers, the public and their representatives) with experience contributing to evidence synthesis production participated in either a face-to-face workshop, online focus group or semistructured interview. We analysed data using descriptive synthesis.

Results

Forty-one methodologists and seven consumers from nine countries participated. A minority of participants in both groups had direct experience with living evidence synthesis. We identified seven themes: harnessing consumer enthusiasm in recruitment; ‘better’ consumer engagement based on deeper relationships; improved and ongoing orientation, support and remuneration; maintaining an ongoing commitment; potentially different guideline development stages and tasks; larger groups of consumers and multiple roles; and ongoing incorporation of consumer insights.

Conclusion

Methodologists and consumers believe living evidence approaches present an imperative and an opportunity to explore new models of consumer engagement, bringing together larger and more diverse communities of consumers in true partnerships with methodologists. Consumer engagement strategies for living evidence allow ongoing improvement to engagement methods and ongoing incorporation of consumer experiences, preferences and values as they develop and change over time.