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Patients need to be heard in CME

Posted by Rebecca Cox

What do patient-reported outcomes, precision medicine, and shared decision making actually mean in the modern era of healthcare? Evidence-based guidelines and expert consensus now highlight the importance of incorporating patient preference when developing management plans. Patients who are empowered to contribute to decisions about their medical care often experience improved outcomes, such as reduced anxiety, faster recovery and increased adherence to their treatment regimens.1,2

It is right therefore that continuing medical education (CME) programs are adapting their practices and programs to reflect this. A few years ago, the Accreditation Council for Continuing Medical Education (ACCME) included Criterion 24, which recognises providers who incorporate patient and/or public representatives as planners and faculty in the delivery of CME. As providers, are we implementing this? Should we be doing more to ensure not just the expert healthcare professionals (HCPs) are informing our programs but also the patients?

Case studies are a staple format in medical education, for a reason. They are a great way to put data and guidelines into the context of daily clinical practice. However, they are typically written by and spoken from the perspective of the HCP, with a somewhat cursory nod to address patient inclusion – their preferences and priorities. Not often do you find practical guidance on how to have these conversations, and when there is, rarely does it come from the patient. It appears that the professional’s opinion is the one to listen to. It is also not yet common place to see a patient or patient advocate on symposium or webinar panels.

When patient’s share their own experiences, it is not merely anecdotal storytelling – the personal narrative can provide vital feedback and guidance to both educators and HCPs, to understand better how to meet their needs and priorities. This applies to all therapy disciplines but none more so than in rare diseases. Perhaps not unsurprisingly the patient knows more about their condition than the HCP treating them, especially in cases of ultra-rare diseases, such as fibrodysplasia ossificans progressiva (FOP).

In the making of our program FOP: Recognition, Treatment and Hope we have heard how HCPs consider the true experts to be the patients and their families: those that are living with FOP. We knew that their voices should be heard and are delighted to have recently launched a series of patient insight video podcasts that really get this point across. We believe CME needs to do more to incorporate patient expertise – they are the end users, they are fully invested in their treatment and quality of life, and ultimately their resilience and courage remind us why we do what we do.

And finally, my shameless personal plug. I will be running the Great North Run in aid of FOP Friends, the UK charity for FOP in September 2022. The charity is fully committed to raising awareness and securing investment for research into this devastating condition. It is likely you have never heard of this condition and I urge you to do some of your own research because I believe you will be as inspired by this wonderful community as much as we are.

You can support me and those living with FOP here.


  1. Coronado-Vázquez V, Canet-Fajas C, Delgado-Marroquín MT, Magallón-Botaya R, Romero-Martín M and Gómez-Salgado J. Interventions to facilitate shared decision-making using decision aids with patients in Primary Health Care: A systematic review. Medicine (Baltimore) 2020;99:e21389.
  2. National Institute for Health and Care Excellence (NICE). Shared decision making [A] Evidence review for effectiveness of approaches and activities to increase engagement in shared decision making and the barriers and facilitators to engagement. Published June 2021. NICE, 2021. [Online]. Available: