Luke Robinson
VP, General Manager, UK, Ireland & Nordics & Head of Marketing, Europe, BioCryst Pharmaceuticals
Learn how physician and patient collaboration can ensure more positive healthcare outcomes.
Imagine having something as trivial as a haircut without agreeing what you want. Many of us jointly decide the outcome with our hairdresser and provide feedback as the cut progresses.
This form of shared decision making (SDM) happens in many aspects of our lives across many different services. Yet, during important medical consultations about serious, potentially life-limiting conditions, two-way conversations may not even begin or could end with ‘See you in three months,’ as we feel unable to ask the ‘right’ questions or in some instances aren’t asked for our opinion.
Sharing health expectations
When it comes to our quality of life, conversation is even more important. Let’s look at hereditary angioedema (HAE), a rare genetic disease characterised by episodes of sudden and spontaneous severe swelling.
Less than 33% of HAE patients discuss individual treatment plans during appointments, which suggests missed opportunities for their unique needs to be heard and met. This is despite international guidelines recommending all patients have, and regularly revisit, action plans with their healthcare providers.
As each patient is unique, so
too are their treatment goals.
Steps to sharing success
As each HAE patient is unique, so too are their treatment goals, ranging from a reduction in swellings to holding down a job or quite simply feeling they can step outside. The SDM process can enable patients to more confidently share personal aspirations, which in turn better enables physicians to use everything in their arsenal to advise and support them in their goals.
This collaborative process leads patients to reframe the disease and think, ‘What do I want?’ It’s also a more rewarding dialogue for physicians and reminds them that, ultimately, it’s equally satisfying to help patients help themselves.
Social contracting
In this way, a social contract is established between the expert and recipient, whereby all expectations and processes are set. Medical professionals agree that the collaborative nature of this contract needs to be further emphasised. Dr Sorena Kiani, Consultant Immunologist at Royal Free London NHS Foundation Trust, says: “Shared decision making is a contract and agreement between me and my patient.”
Dr Kiani expands on this in the HAE UK ‘Power of Partnership’ report, produced in collaboration with BioCryst. An in-depth look at what works and doesn’t, this report suggests practical resources to help start conversations.
The HAE field is a dynamic, fast-changing space with increasing treatment options. Now is the time for more physicians and patients to begin exploring the shared possibilities together.
UK.BCX.00363
September 2024
[1] HAE UK. The Power of Partnership: Shared Decision Making in HAE. Available at: https:// www.haeuk.org/power-of-partnership/. Last accessed: September 2024
[2] Maurer M, Magerl M, Betschel S, et al. The international WAO/EAACI guideline for the management of hereditary angioedema-The 2021 revision and update. Allergy. 2022;77(7):1961-1990.
