Consumer Engagement in Living Evidence “A Beautiful Opportunity”: International Qualitative Study with Patients and Methodologists

Abstract

Introduction: Evidence synthesis producers and publishers internationally are moving to a ‘living evidence approach’, where systematic reviews, guidelines and health technology assessments are continually updated with the latest evidence. Consumers (including patients, carers, their representatives and the public) should be actively involved in living evidence production but there is uncertainty about best practices for doing this. We aimed to explore the opportunities and challenges and practical strategies for consumer engagement in living evidence.

Methods: Methodologists (producers of systematic reviewers, guidelines and health technology assessments) with an interest in living evidence and consumers with experience contributing to evidence synthesis production participated in either a face-to-face workshop, online focus group or semi-structured 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 patient insights.

Discussion: Consumers are enthusiastic about the concept of living evidence. Consumers and methodologists believe it presents an imperative and 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.

Note:
Funding declaration: This article was not externally funded. The Australian Living Evidence Collaboration is supported by Australian Government Department of Health, Victorian Government Department of Health and Human Services, West Australia Department of Health, The Ian Potter Foundation, Walter Cottman Endowment Fund (managed by Equity Trustees), Gandel Philanthropy and Lord Mayors’ Charitable Foundation.

Conflict of Interests: All authors have no conflicts of interest to disclose.

Ethical Approval: All participants provided informed consent. Ethical approval was obtained from the Monash University Human Research Ethics Committee (no. 14831) with reciprocal approval from the La Trobe University Science Health and Engineering College Human Ethics Sub-Committee.

Keywords: Patient and public involvement, consumer engagement, living evidence, living guidelines, living systematic reviews, living health technology assessment