Consumer involvement in Cochrane and why we are developing a Statement of Principles
By Richard Morley, Cochrane Consumer Cordinator
In 2015 The Cochrane Consumer Network took a hard look at the state of consumer involvement in Cochrane and found much to celebrate:
- a long history of consumer involvement, going back to the start of Cochrane
- a network at the time, of over 1300 patients (over 1500 in 2016), care givers, and others who have volunteered their time to help
- between 300 and 500 people who regularly contribute to reviews and in other ways, in any 12-month period
- overwhelming understanding and support for the principle of involving consumers, right across the organisation
But there is still much to do because the review also found:
- inconsistencies in the ways consumers are involved
- the desire from consumers to be more involved, in different ways, and to be better supported
- a need for more guidance, tools and resources from authors and others to help them involve consumers better
- an expectation from our partners that consumers be involved beyond the job of peer reviewing, for example in helping to identify priority review questions and important outcomes
To address these concerns, in 2016 the Consumer Network Executive prepared the Consumer Delivery Plan to 2020. The plan sets out eight key priorities for the development of consumer involvement in Cochrane. The first priority is to “Develop and adopt a statement of principles about consumer involvement in Cochrane”
Here are three good reasons why we need a statement like this:
More consistency, more openness and better research
Consumer involvement is important because the way we work should be open for all to see, and because it results in evidence that meets the needs of the people who use it. A shared agreement on the consumer role and how the entire organization can work with consumers will make our work clearer, reduce variations and uncertainty, and improve our effectiveness.
Everyone will know what to expect
The statement has three guiding principles: equity (consumers’ contributions in both expertise and time are valued equally with other contributors), inclusiveness (making sure that, as far as possible, consumer representatives come from a wide range of countries and backgrounds and are fully involved), and partnership (involving consumers in many ways in the review production process, from concept to knowledge translation, and in all other Cochrane activities including the way the organisation is governed). The statement will help everyone understand how we can work together.
Our partners expect it
Increasingly funders, publishers and users of research expect, and often instruct, researchers to involve consumers in their work. In November for example, the Australian National Health and Medical Research Council and the Consumers Health Forum of Australia released their own statement on Consumer and Community Involvement in Health and Medical Research (http://bit.ly/2gW0rMc) and there are similar statements in New Zealand, the UK and elsewhere. Cochrane is a part of the same network of organisations and needs to show its practice is up to date.
Please review the statement and let us know what you think of it. What have we missed? Can it be improved? You have until the 31 December 2016 to have your say. Go to http://community.cochrane.org/news/call-consultation-consumer-involvement-cochrane
Why not join the Cochrane Consumer Network? It’s free, and you receive monthly news digests about the latest health evidence and opportunities to get involved. http://consumers.cochrane.org/
You can also join the conversation on Facebook at https://www.facebook.com/groups/188375461224285/ and on Twitter by searching for @cochraneconsumr.
If you have any other questions about the statement or anything else to do with consumer involvement, please email Richard Morley, Cochrane Consumer Coordinator at firstname.lastname@example.org.
To take part in the consultation please go to http://community.cochrane.org/news/call-consultation-consumer-involvement-cochrane