Power to the public? The layman’s influence in Research

So, during the Departmental Conference, I particularly enjoyed the seminar by a representative of the James Lind Alliance, an organisation that I was previously unaware of. In a way they have been taking a niche approach and have turned the tables around when considering the formulation of research areas and topics.

The James Lind Alliance are concerned with the areas of health research that are deemed important in the eyes of patients,carers and clinicians (PPC). Those who find themselves under either of these three umbrellas rarely instigate research or influence research agendas and so much of modern research may be losing out on pursuing useful research topic areas of great value.

Stemming from Sir Iain Chalmers work into reducing wasteful reporting of research, the James Lind Alliance seeks to involve the PPC in contributing to future research projects. Doing so ensures that projects are based on a shared set of priorities influenced by PPC and the researchers. The presentation highlighted the ways this approach has opened the doors for research with patient groups who had previously been unwilling to participate in ‘traditional’ research on sensitive topic areas, groups who had not been given a voice to air their suggestions and concerns. Also mentioned were examples of where questions suggested by patients at the start of the JLA process had been transformed into research funded by the National Institute of Health Research (NIHR).  The PPC factor allows for potentially valuable research questions to surface which would otherwise have not been heard or recognised, and upholds the value of the research among the people it is likely to affect the most both in its delivery in practice (clinicians and carers)  and the receipients such practices (the patients).

When there is a disconnect between areas that researchers feel are important to patients and areas the patients themselves feel are important, the value of the such research reduces to a certain degree. I feel that it is important for those who will be affected by the end result of any research to be just as involved in guiding the research topic areas as the researchers themselves.  Having the two parties working together is the best way for the utmost benefit to come out of any piece of research and to prevent avoidable ‘research wastage’.   

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