Cochrane will no longer use the term ‘consumer’ to represent patients and the public, which we previously defined as ‘healthcare consumers’. We have adopted the term ‘patient and public involvement’ to describe research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them.
Represented groups include patients and potential patients, carers, people who use health and social care services, and people or organizations that represent these groups.
Patient and public involvement helps to make our research ethical, relevant, and impactful. Insights from members of the public can shape meaningful research questions and produce useful findings. People living with a health condition are often in a better position to identify unanswered questions and determine what research would most likely improve their quality of life.
Involving patients and members of the public also improves transparency, informed consent, ensures respectful and practical participation, and enhances communication by presenting information in accessible and useful formats. Ultimately, it helps research to better serve the needs of patients and the public.
“Involving patients and members of the public has long been an important part of Cochrane’s work,” says Karla Soares-Weiser, Acting Chief Executive of Cochrane. “It ensures that our reviews are not only scientifically rigorous, but also meaningful and relevant to the people they aim to serve. We hope that this name change makes clear that anyone can contribute to Cochrane, and we welcome diverse experiences from patients and members of the public across the world.”
Anyone who would like to get involved in Cochrane’s work can volunteer through our website or join the Patient and Public Network to receive monthly updates and opportunities to get involved.
Jack Nunn, Co-Chair of the Cochrane Patient and Public Network Executive, said:
"Cochrane started as a collaboration for everyone over 30 years ago. Language evolves, and choosing the right words is essential. Cochrane's change to using 'patient and public involvement' reflects a global shift and shows they have listened to the many voices from around the world who felt 'consumer' was no longer the right word. By saying 'patient and public involvement', more people are likely to understand the important and essential concepts behind those words — and the actions to which they point, which is involving everyone in shaping the future of evidence."
Cochrane acknowledges that many different terminologies are used across global health. We are committed to revisiting these terminologies regularly and collaboratively updating them as they evolve, ensuring that concepts not only translate across languages but also align with local contexts.
Using language that better reflects the values of the people who support and use Cochrane evidence has the potential to improve inclusivity, foster a sense of belonging, build relationships, and strengthen trust with diverse communities including underrepresented groups.
Our Patient and Public Involvement Manager, April English, will be updating Cochrane materials to reflect the new language over the coming months.