Consumers: roles, tasks, level of involvement and impact in Cochrane systematic reviews

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (6)

Date: 

Monday 17 September 2018 - 15:00 to 15:20

Location: 

Sidlaw Auditorium

All authors in correct order:

Flodgren G1, Bidonde J2
1 Senior Researcher, Norwegian Institute of Public Health, Oslo, Norway
2 Norwegian Institute of Public Health, Oslo, Norway and CIHR –CADTH/McMaster University Health System Impact Fellow, Canada
Presenting author and contact person

Presenting author:

Gerd Flodgren

Contact person:

Gerd Flodgren
Abstract text
Background:
Consumers can provide valuable input at different stages of the review process: in the production of evidence (e.g. prioritising or framing research questions, selecting outcomes and interpreting results), in making evidence accessible (e.g. commenting on reviews, improving readability) and in promoting the use of evidence. In 2017, resources and guidance were published for improved consumer involvement in Cochrane Reviews (ACTIVE project) and improved reporting of this involvement (GRIPP2 tool). This study follows up on our previous investigation, pre-dating these resources, which revealed marginal consumer involvement in Cochrane Reviews.

Objectives:
To assess the extent of consumer involvement in Cochrane Reviews: what roles they play, what tasks they perform and what impact they have, as well as who the consumers are.

Methods:
We searched the Cochrane Library for intervention reviews published from Feb 2017 to Feb 2018. We searched full texts for any mention of 'consumer', 'stakeholder' or 'user', and further scrutinised those that did. We extracted data on roles, tasks, level of involvement, impact and consumer characteristics.

Results:
We identified 359 intervention reviews. Of these, 199 mentioned one or more search terms, but only 61 (15 review groups) actually described some consumer involvement. Consumer roles were described as: editor (3); referee (16); member of international panel or stakeholder group (24); authors (8). The tasks performed by consumers were mainly providing feedback, assistance or advice in the editorial process. Adequate description of the level, and impact, of this involvement was typically lacking. In three reviews, consumers were part of a consultation process to select important outcomes for 'Summary of findings' tables and to prioritise research questions. In six reviews, authors stated that outcomes were 'selected based on relevance to consumers', but did not describe how they were involved.

Conclusions:
Our findings suggest that most review groups do not involve consumers. If they do, the type and level of involvement are poorly described. In addition, we do not know if the consumers used are representative of the larger populations. Review authors should be encouraged to use existing resources and guidance developed for the purpose of facilitating consumer involvement and reporting.


Relevance to patients and consumers: 

This piece of research emphasizes the need for improved engagement with healthcare consumers in Cochrane reviews, and of improved reporting of the type, level and impact of this involvement. Our study also points towards available guidance and resources that can be of valuable help for review authors for involving consumers, as well as for adequately reporting this involvement. Involving consumers in the evidence production may help to ensure that the research questions asked, and the outcomes selected, are relevant to the larger population of consumers.