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Shared decision making and the rare disease community

On Friday 19 June, Genetic Alliance UK met with Dr Aoife Molloy, Clinical Fellow at the National Institute for Health and Care Excellence (NICE), to discuss the work that she’s doing on shared decision making (SDM). We’re hoping to be able to do some work around SDM because of its importance to the rare disease community.

SDM is a collaborative process that allows patients and their doctors to make healthcare decisions together. SDM is a two-way process: medical decisions are made using both the relevant scientific evidence and the patient’s values and preferences. The team at NICE have seen that SDM has benefits for patient’s physical, psychological and psychosocial health. Patients feel much more positive about the decisions that have been made. Having the space to make an informed choice about their own healthcare also means that patients are more likely to adhere to the treatment agreed on.

This process isn’t new. Many people are already making shared decisions with their clinicians every day – but NICE aims to embed this into all their clinical guidelines. Communication and health literacy are key issues in putting the ideas of SDM into practice. NICE are currently looking at developing ‘decision aids’ to help doctors to include patients in the decision making process, as well as giving patients the tools to empower themselves. The use of decision aids has been linked to reduced anxiety, improved satisfaction and improved knowledge. They allow people to feel as if they have made an informed choice.

We think this idea is really important for the genetic and rare disease community to embrace. For rare disease patients, the ability to say ‘this is what matters to me’ is really important, and helps them get care and support tailored to their specific needs.

The incorporation of SDM into NICE guidelines could be a great starting point in what Dr Molloy regards as a revolution in the way patients engage with their healthcare. Maybe in the future your doctor will be asking “what matters to you?” rather than “what is wrong with you?.”

If you have any thoughts or comments on the idea of SDM, please feel free to get in touch with uscreate new email, we’d love to hear your ideas!

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