clinical practice guidelines and the voice of patients

Clinical practice guidelines (CPG) are the user manuals of modern medicine. If the human body can suffer it, chances are there's a guideline for treating it, from burns and breaks to cancers and strokes. At their best, they provide gold-standard guidance to doctors: how to diagnose and treat a condition, what symptoms to watch for, what tests to order. But that's not always the reality. Clinicians are experts, but the patients with the disease are also experts. They're the ones living with it on a daily basis.

Guideline development could be unsatisfactory and unreliable. Because it so often fails to engage any patients or caregivers. Usually guidelines are developed without any input from the people who would actually experience them. Also, there is no consensus on what exactly patients and their representatives should be asked to do during CPG development. For example, should they be active members of guideline groups, or should patient input and preferences be shared only with clinicians in guideline groups. Moreover, there is little clarity about how guidelines should reflect patient-based evidence, or information generated by patients about different aspects of care, patient preferences, and care experience.

Rand (2019) in an interdisciplinary team of researchers, patient representatives from the Parent Project Muscular Dystrophy (PPMD) and clinicians developed the RAND/PPMD Patient-Centeredness Method (RPM) - a version of a Delphi method- with a online approach to engaging patients and their representatives in Clinicial Practice Guildelines.

The authors said that Duchenne was a good test case, because the disease is so rare, so complex, and the balance between treatment and quality of life is so precarious. but this method should be formally validated and tested in the context of other clinical conditions and compared to other ways of engaging patients in CPG development.

Open access article

photo: Moda ald carrer 1971. Joana Biarnés (1935-2018)
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