Shared decision making in rare disease in the United Kingdom

5 February 2021

A PRIME Centre Wales led White Paper has been published (Jan 2021) to address shared decision making for patients with rare disease. 

There are always two experts in a consultation: the clinician and the patient. The clinician has medical knowledge and experience in evidence-based medicine and care. The patient is an expert in their own needs, values and personal circumstances – including experience of what it is like to live with their condition.

Shared decision making (SDM) is a process of continual exchange of information between these two experts in order to build a trusting, collaborative relationship and a shared understanding of how best to manage the condition for this particular individual.
There are many benefits of SDM for patients. With greater knowledge of the options available to them and the support to consider these based on their own preferences, patients feel better informed. Their confidence to participate also increases and they are clearer about what matters to them. Patients have more accurate expectations of the benefits and risks of treatments and, by increasing involvement in their care, adherence to treatment could be improved.
In the context of rare diseases, SDM is even more important as there is often not a gold-standard treatment or care option available. Clinician experience and patient knowledge may be limited, but patients certainly have invaluable experience of what it means to live with the condition, which should guide decision making. However, while SDM is promoted across all healthcare settings and embedded in healthcare policy, there is currently no specific guidance for clinicians and people living with rare diseases on why, when and how this model should be used and the strategies they could use to implement it.

Dr Natalie Joseph-Williams, Senior Lecturer in Improving Patient Care, PRIME Centre Wales, School of Medicine, Cardiff University, comments:
"Over the last few months, I have chaired a Working Group whose aim is to shine a light on the important subject of SDM in rare disease. Our collaboration has led to this white paper, which we hope presents a clear picture of the current barriers and needs within SDM in rare disease in the UK and opportunities for its implementation going forward.

"We hope this paper delivers a call to action for stakeholders in rare disease communities to facilitate the implementation of SDM. Ultimately, we want every patient with a rare disease to be able to say: “this is what matters most to me right now”, and for them to receive care and support that is tailored to their own goals and preferences – care that values patients’ lived experiences."

View and download the site paper here
Shared decision making in rare disease in the United Kingdom.pdf