Consumer engagement in health care policy, research and services: methods and effects.

What is it about?

The importance of consumer engagement (CE) at all levels of health care is widely recognised. We searched all available literature up to 2020 to find evidence for the methods and effects of consumer engagement on health research, policy and services. We found 22 trials that were conducted in a robust way (randomised and controlled) that involved over 136,000 participants collectively.

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Why is it important?

Our review of these studies shows that increasing research has been done to evaluate the effect of CE and to find the best ways of involving consumers in health care. Most of the included trials compared interventions that engaged with consumers with interventions where there was no engagement with consumers. CE strategies in this review typically adopted a consultative approach during the development phase of interventions and were targeted to health services. There is evidence that CE in the development and delivery of health services to enhance the care of pregnant women results in fewer babies dying around the time of birth. However the CE-empowered service does not necessarily affect the survival of mothers. There is also evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, and can improve knowledge, without affecting their anxiety. We can be confident that these findings are unlikely to change if further studies are conducted. For other areas there is evidence of benefits however we are not as confident that these results will be consistently supported in the future. For example, there is evidence that there are some positive effects of CE on the development and/or implementation of health professional training. Similarly, there is evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is evidence that an informed consent document developed with consumer input (potential trial participants) may have little if any impact on understanding compared to a consent document developed by trial investigators only. There is some evidence that telephone discussions and face-to-face group meetings may engage consumers better than mailed surveys in order to set priorities for community health goals, and may also result in different priorities being set for these goals.

Perspectives