Making meaningful consumer involvement a reality- reflections from the Cochrane Symposium
16 April 2019
In March 2019, the joint Cochrane UK and Cochrane Ireland symposium (#CochraneInspires) took place in Oxford. I attended a workshop facilitated by Cochrane’s Consumer Engagement Officer Richard Morley on ‘Making meaningful consumer involvement a reality’. As a full-time systematic reviewer, and patient and public involvement lead in a former life, this workshop was a perfect integration of two of my main research interests. The Cochrane Collaboration widely uses the term consumer involvement rather than patient and public involvement to associate it with any person who uses a health service. Consumers who generally use Cochrane evidence are patients, carers and family members, or people seeking information about health condition(s) or treatment(s) for personal use. Having involved consumers in systematic reviews previously in a health research setting, it was fascinating to hear about consumers and researchers’ perspectives and experiences of involvement in reviews and embedding this in Cochrane.
The Statement of Principles for Consumer Involvement in Cochrane sets out the organisation’s commitment to meaningful involvement through the review process- from production to dissemination. A range of topics including the use of the term consumer involvement and its appropriateness, multiple identities of consumers and the perspectives they bring to the table along with power dynamics and how it is managed was discussed at length.
Some of the practical and methodological uncertainties within the Cochrane community, such as who is recruited and how, when they were involved, how best to engage them and to what extent, and reporting involvement were hot-topics during the workshop.
To sum up the workshop:
1) Need to strike a balance when involving consumers and ensuring that involvement is meaningful to consumers and coproduction is not always appropriate
2) Considerations for building trust and relationships, and supporting consumers to navigate through difficulties in accessing information and being part of the review team
3) Mindful of the time-consuming nature of involvement due to other personal commitments, therefore a strong commitment from researchers is needed from the get-go.
4) Need for embedding involvement in the review process as a best practice rather than seen as tick box activity done in addition to the review
5) Training and supporting consumers and researches to enable effective involvement in reviews
6) Need to mandate reporting of consumer involvement in Cochrane Reviews
For those researchers interested in involving patients/public in systematic reviews, here are some fantastic resources freely available:
Involving People is a learning resource for systematic review authors to support them in getting people involved in reviews.
Cochrane Crowd invites people to become involved as citizen scientists – even for those with very limited time to spare.
TaskExchange is an online platform connecting people working in health evidence with others who have time and skills to contribute.
What's in a name? Patients, people and the power of words, a blogpost by Richard Morley and Sarah Chapman.
*Cochrane is developing learning resources for patients/public who are interested in getting involved in systematic reviews including free modules on Evidence Based Medicine, Clinical Trials and Systematic Reviews
For a more detailed account of this workshop see Sarah Chapman’s blogpost
For an overview of the Cochrane symposium see the #CochraneInspires transcript