Thursday 23rd November 2023
This week at PCR London Valve, Heart Valve Voice held a Patient Engagement Session with our Patient Advocates to discuss Global Heart Hub's Shared Decision-Making Roadmap. The session looked a the roadmap from a UK perspective, and our advocates explained their experience of shared decision-making and looked at ways we can use the roadmap to improve patient experience in the UK.
The meeting was held at PCR London Valve, an event attended by over 3000 cardiovascular specialists worldwide. During the conference, Global Heart Hub released its Shared Decision-Making Roadmap and patient-led document which seeks to promote good shared decision-making. The Roadmap sets out a series of global and local actions, which Global Heart Hub affiliates can use to improve shared decision-making in the UK.
To mark its launch, Heart Valve Voice invited Patient Advocates to attend a Patient Engagement Session, which would look at the roadmap and aim to identify a series of actions to improve patient experience in the UK.
The discussion was centred around 3 key topics
1. Shared decision-making as a collaborative process
2. Access to good-quality information
3. The decision-making process.
Heart Valve Voice Executive Director, Wil Woan, began the meeting by outlining what shared decision-making is and what good practice looks like - highlighting the importance of collaboration in the decision-making process, and outlining what the UK NICE Guidelines for Shared Decision-Making say.
We then looked at the Shared Decision-Making Roadmap, where Global Heart Hub Development Executive, Teresa Glynn, explained the process that went into writing the Roadmap and how it can be used at a local level to improve patient outcomes.
Click here to download a copy of the roadmap
Our Patient Advocates then brought the Roadmap to life by sharing their experience of shared decision-making.
Alison Banayotti highlighted her positive experience of shared decision-making, and how her heart team gave her access to an array of good quality information to base her decision on and allowed her to prioritise lifestyle decisions when deciding on when to be treated.
However, we also heard that many patients were given limited or no information, and didn't feel empowered to be part of the decision-making process. Angie Martin explained how she felt that the decisions were being made for her, and she didn't feel like she could question what was being said. She also highlighted how her hearing impairment was not factored into the process, and meant she was unable to have good-quality conversations with her clinical team.
Other advocates didn't feel like all clinically appropriate treatment options were made available to them, and if they hadn't fought for the treatment option they wanted, they would have been led down a different path. John Wolfson noted, "Too often the personalities involved in the decision-making process determine what the final decision is", and the group agreed that there needs to be a way of ensuring the process is objective for everyone.
We then discussed Decision Aids and how Heart Valve Voice and our Patient Advocates could develop aids that support patients and clinicians throughout the process. The group agreed to work with Heart Valve Voice on a suite of materials that are accessible to all patients and help improve the process.
Heart Valve Voice Executive Director, Wil Woan, said, "Thank you, our incredible advocates, for attending the meeting in person and online. Global Heart Hub's Shared Decision-Making Roadmap is a brilliant resource, and I was proud to see such a strong group of patients come together to work out how we can bring that document to life and improve outcomes for patients. Shared decision-making is proven to improve clinical outcomes and should be a fundamental part of the valve disease pathway. This meeting was the starting point in bringing that Roadmap to life and ensuring all patients feel empowered and an active part in the decision-making process."