Consumer involvement – all talk and no action?

Written by Gerd Flodgren, researcher at the Norwegian Institute of Public Health

Today it is considered very important to involve consumers in the research process, not only in primary research but also in systematic reviews. Consumers are recipients of healthcare or social care, they are patients or clients, but may also be those who have a family experience of a condition or topic under consideration, or someone who is a formal representative of a consumer group. In fact the MECIR standards (Methodological Expectations of Cochrane Intervention Reviews) and MECCIR, to which all Cochrane and Campbell review authors are expected to adhere, respectively, state that it is mandatory to involve consumers throughout the review process. But how good are we in doing this?

Why is it important to involve consumers?

Engaging consumers early in the review process (i.e. at the protocol stage) can ensure that the focus of the research questions is relevant to the particular group of consumers, and that the outcomes evaluated are those that are of most importance to them. Later, consumers can be of help to improve readability of the review findings, by reading and providing feedback on the plain language summary. This may ensure that the research findings are accessible and understandable to other consumers, thereby increasing the chance of them being used.

Can we risk not involving consumers in our systematic reviews? I think not. Failing to engage with consumers of healthcare or social care may result in unfocused review questions that are of limited interest to the consumers, and to evaluation of outcomes that are irrelevant to the group of consumers in question. It also increases the risk of review findings being formulated in ways that consumers find unintelligible, so that they will fail to have an impact on the care choices of consumers.

Very few review author groups engage with consumers

We were interested in finding out whether, and how, review authors of Cochrane and Campbell reviews engage with consumers and how this involvement is reported in reviews and review protocols. In February 2017, we searched for protocols and reviews published during the last 12 months, and scrutinised those identified for any mention of consumer involvement. Our findings suggest that very few review author groups engage with consumers, or at least their involvement is not evident by reading the methods or the results section, and if they are involved, their contribution is not acknowledged.

Review groups may need better guidance on how to engage with consumers and how to report their contribution in a standardised way. A recent Australian study* indicates that workshops for researchers increased their awareness of the role of consumers, and through this their attitudes and behaviour regarding involving consumers in their research project. This could work also in the field of systematic reviewing.

We will present the results of this study of consumer involvement in Cochrane and Campbell reviews at the Global Evidence Summit. Do come and talk to us there.

*McKenzie et al. Research Involvement and Engagement (2016) 2:16 DOI 10.1186/s40900-016-0030-2

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