Patients and carers play a vital role in Cochrane

Cochrane uses the term consumers to represent patients, carers and family members with first-hand experience of a healthcare condition. Cochrane has a long and rich history of involving consumers globally in all aspects of our work.

Cochrane supports involvement and engagement in health research because it:

• promotes transparency, accountability and trust in the way that research is produced;
• results in evidence that addresses consumers’ needs, reduces waste in research, improves the translation of research into policy and practice, and ultimately leads to improved benefits for health systems and outcomes for patients;
• is consistent with current health research approaches and is expected or mandated by our funders, partners and consumers.

How we are engaging with healthcare consumers

• Statement of Principles for Consumer Involvement in Cochrane lays out how we will engage with consumers and our commitments to them.
• Cochrane Consumer engagement and involvement framework to 2027 builds on existing work leading to consumer involvement throughout the entire process of research and dissemination of Cochrane evidence.
• Shared commitment to public involvement in health and social care research was signed by Cochrane along with other health and social care leaders.
• The Cochrane Consumer Network, established in 1994, is a free-to-join community that is united by a desire to find high quality health evidence, and to be part of creating and sharing that knowledge.

Consumer involvement in practice

• Consumers involved in the governance of Cochrane - Two consumers sit on Cochrane’s Council and are also represented on a range of Cochrane groups including the Editorial Board.
• Members of the author team - Lived experience of the healthcare condition, as a patient or carer, can make a substantial contribution to the research question, research design, interpretation of data, and dissemination and knowledge translation of findings.
• Members of advisory groups - Advisory groups provide oversight and input throughout the whole review process.  The authors can turn to them for advice or input when specific issues arise during the review process.
• The Covid 19 consumer rapid response group - A global volunteer group with a range of lived experience, including people who have recovered from COVID-19 and those who have been care-givers.
• Consumers as peer reviewers - Consumer peer review involves giving feedback on Cochrane protocols and reviews before they are published to ensure they are relevant and accessible.  This ensures better outcomes for patients.

Learning for consumer engagement and involvement

• Cochrane Evidence Essentials is a co-produced, interactive, free introduction to evidence-based medicine, clinical trials, Cochrane evidence and getting involved.
• Involving People is evidence informed and co-produced guidance and resources for research teams looking to involve stakeholders in systematic reviews.
• Cochrane consumer involvement collection includes recorded webinars, short guides, and links to other learning to help research teams involve stakeholders in meaningful ways.
• Consumer involvement - a guide for funding applications explains how consumers could be involved and best practices for their involvement.
• Join Cochrane: a volunteer pathway for healthcare patients and carers.

Stay connected

• Email: Get in contact with Cochranes Consumer Engagement Office at consumers@cochrane.org
• Social media: Follow Cochrane Consumers on Twitter and Facebook.