Patient & Public Involvement
Patient and public involvement (PPI) is not about you participating in a clinical trial or research study, although it is vital to clinical research that people participate in this way. Involvement in diabetes research is about you forming a partnership with researchers working in this field, to help guide studies and programmes so that they meet the needs of people affected by the condition.
How can you influence research?
Few researchers live with the condition they study. Living with diabetes for 24 hours a day gives you a different perspective on research and can bring a different kind of expertise to that which researchers may have developed. Sharing your experience and knowledge with researchers may help to shape studies or develop programmes of research on topics that are relevant to many people affected by diabetes.
By getting involved as a Patient Advocate, you might influence many stages in the research cycle (see below), from identifying topics that might be important to people with diabetes, their families and carers, through designing studies, to evaluating the results and disseminating the findings of research studies to the general public. Obviously, you do need have to become involved in all these aspects – most opportunities for involvement focus on one or two of these areas.
Research Cycle
Patient and public involvement in research is a relatively new area, which has been pioneered by INVOLVE, formerly known as ‘Consumers in NHS Research’. This organisation was founded in 1996 to change the research landscape so that people could have a say in which research studies should be funded, which questions should be asked, how these studies should be conducted and how they relate to the public’s needs.
For more information about INVOLVE and the excellent advice that they offer about patient and public involvement, please visit the INVOLVE website.
The DRN considers patient and public involvement to be an essential part of the future of diabetes research, making its work more relevant to the public and helping it to make improvements in diabetes care for all.
If you would like to see if any involvement opportunities are currently available in your area, visit the Involvement Opportunities area for more details.
And if you would like to register your contact details for future involvement opportunities, please visit the registration form.