Involving consumers in health research through the use of consumer panels: a scoping review.

backgroundThe importance of involving the lived experience of consumers in health research is increasingly well recognised. There are multiple models of consumer involvement, with consumer panels one way of efficiently organising the involvement of people in health research. Consumer panels are a way of supporting ongoing or longer-term meaningful consumer involvement rather than one-off involvement in discrete research activities. The aim of this review was to map the depth and breadth of studies reporting the use of consumer panels in health research internationally and to synthesize this evidence to provide useful guidance for researchers interested in the development of consumer panels for research.

methodsA scoping review was conducted. Four databases were searched for English language studies from high income countries reporting on consumer panel member involvement in health research. Seven reviewers undertook title and abstract screening, and five reviewers undertook full text screening. Results were summarised and content analysis was undertaken to synthesise the findings. One rural health consumer contributed to screening, data interpretation and manuscript writing.

resultsA total of 71 papers were included in this review. Most papers were from the Netherlands (n = 28) and the United States (n = 21). The size of panels was either small (< 50 members) (n = 26) or large (> 200 members) (n = 34). There was great variation in panel composition and level of panel member involvement in research. Involvement was often limited to discrete stages of the research cycle, with details about sustained, meaningful engagement often lacking. Benefits of panel involvement were documented for both researchers and consumers; however, benefits to consumers were often less explicit, particularly in terms of long-term impact.

conclusionConsumer panels can offer valuable insights grounded in lived experience, which have the potential to improve the quality, relevance and equity of health research. However, the development and involvement of consumer panels in health research remain inconsistently reported and evaluated. Co-developing structures that support meaningful, ongoing participation will provide greater clarity around roles, evaluation and impact. This is essential for embedding consumer engagement meaningfully in research and translating it into health policy and practice change.