Should Patients Have More Say in Clinical Guidelines?
Should Patients Have More Say in Clinical Guidelines?
Editor's Note: While onsite at the 2015 American College of Rheumatology (ACR) Annual Meeting in San Francisco, California, Medscape spoke with Liana Fraenkel, MD, MPH, a professor of medicine at Yale University School of Medicine, about her new study assessing the feasibility of expanding patient participation in the development of new clinical guidelines.
Medscape: Hi, Dr Fraenkel. What can you tell us about the study you'll be presenting here at the ACR conference?
Dr Fraenkel: There is a growing recognition of the importance of having patients involved in the development of guidelines in order to make sure that their voices are heard. However, typically guideline voting panels have only one or two patient representatives and eight to 10 physicians, and patients are therefore at a significant disadvantage.
So we said, "What if the recommendations were developed by a panel composed entirely of patients?" We wondered if this might be a feasible way to hear the patient voice. As a first step, we collaborated with Arthritis Power, a patient research network created by CreakyJoints and the University of Alabama at Birmingham and funded by the Patient-Centered Outcomes Research Institute. Ten patients with rheumatoid arthritis (RA) who are very interested in research agreed to have several hours of training to learn about evidence-based medicine and guidelines. We then met with them at a face-to-face meeting to first introduce the project and go over the procedures, including how to read evidence tables and how to vote on the direction and strength of recommendations.
The following morning, we presented the topics that were supported by moderate- or high-quality evidence to the patient panel. We used exactly the same procedures as those used for standard ACR guidelines: Each question was read aloud, discussed by the panel, and then voted on using an anonymous online voting app.
The process ended up going very smoothly. The patients were able to vote on all but one or two questions, for which the patient panel felt there was insufficient evidence to be able to develop a recommendation. The difference here is that physicians often vote on issues in which there isn't clear evidence by using their clinical expertise.
At the end of the day, it turned out that the vast majority of recommendations that they developed were completely concordant with the physicians'. That said, there were a couple of places where patients and physicians differed.
Editor's Note: While onsite at the 2015 American College of Rheumatology (ACR) Annual Meeting in San Francisco, California, Medscape spoke with Liana Fraenkel, MD, MPH, a professor of medicine at Yale University School of Medicine, about her new study assessing the feasibility of expanding patient participation in the development of new clinical guidelines.
Medscape: Hi, Dr Fraenkel. What can you tell us about the study you'll be presenting here at the ACR conference?
Dr Fraenkel: There is a growing recognition of the importance of having patients involved in the development of guidelines in order to make sure that their voices are heard. However, typically guideline voting panels have only one or two patient representatives and eight to 10 physicians, and patients are therefore at a significant disadvantage.
So we said, "What if the recommendations were developed by a panel composed entirely of patients?" We wondered if this might be a feasible way to hear the patient voice. As a first step, we collaborated with Arthritis Power, a patient research network created by CreakyJoints and the University of Alabama at Birmingham and funded by the Patient-Centered Outcomes Research Institute. Ten patients with rheumatoid arthritis (RA) who are very interested in research agreed to have several hours of training to learn about evidence-based medicine and guidelines. We then met with them at a face-to-face meeting to first introduce the project and go over the procedures, including how to read evidence tables and how to vote on the direction and strength of recommendations.
The following morning, we presented the topics that were supported by moderate- or high-quality evidence to the patient panel. We used exactly the same procedures as those used for standard ACR guidelines: Each question was read aloud, discussed by the panel, and then voted on using an anonymous online voting app.
The process ended up going very smoothly. The patients were able to vote on all but one or two questions, for which the patient panel felt there was insufficient evidence to be able to develop a recommendation. The difference here is that physicians often vote on issues in which there isn't clear evidence by using their clinical expertise.
At the end of the day, it turned out that the vast majority of recommendations that they developed were completely concordant with the physicians'. That said, there were a couple of places where patients and physicians differed.
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