Thursday 11th March 2021
Last week I read with intrigue the Heart editorial about Professional Societies' role in developing guidelines and the importance of NICE being an independent, evidence-based organisation providing recommendations.
From my Heart Valve Voice experience, I have seen the vital role Professional Societies play in improving outcomes and experiences. They have a proven track record of engaging a broad range of opinions and expertise to develop their recommendations. However, I recognise the importance of fixed evidence collection and welcome the debate on an industry-standard approach to developing guidelines - something which I've no doubt will only improve patient outcomes.
Amongst the debate, I was disappointed to see the omission of patients and their vital role in developing guidelines. As CEO of a patient organisation, I take the responsibility of presenting patients to committees extremely seriously. Over my years at Heart Valve Voice, I have seen the impact patients have had on improving guidelines and the impact that patient-focused guidelines can have on healthcare.
At a recent All-Party Parliamentary Group for Heart Valve Disease, patient engagement expert Neil Betteridge said 'the time has come for patient and public involvement in improving service delivery', stating that with heart valve disease, 'we have an opportunity to live the message of "active patient involvement" and produce a set of guidelines that are patient-focused.' Neil's passion for patient involvement echoes my own, and that sentiment has been the driving force behind Heart Valve Voice's preparations for the release of NICE's draft guidelines for heart valve disease.
Good active patient involvement needs to fulfil two criteria. It needs to be meaningful, and it needs to be representative.
That means reaching out to a broad range of patients from different pathways, backgrounds and ethnicities to learn and understand the wide range of issues and concerns they encountered during their treatment and to feed these experiences into the guidelines that will shape the future of valve disease. At Heart Valve Voice, we have undertaken this very task to prepare for the release of NICE's draft guidelines for heart valve disease. Drawing on our thousands of supporters' experiences, we want to curate a genuinely patient-focused response led by individual and collective experience.
However, we need to do more than just ask them about their experience for it to be meaningful. We need to educate and empower patients, teach them how these guidelines work, their role in our response to them, and what that will mean for future patients. This kind of meaningful engagement enables us to harness their voices, draw out the subtle nuances from their experiences, understand how they relate to guidelines, and present those findings to NICE as part of our response.
To do this, we have developed a bespoke programme of tutorials, webinars, questionnaires, focus groups and polls, to maximise their input and improve our output. As a patient organisation, these voices empower everything we do, and it is now more important than ever to maximise the power and impact of their experiences.
When the time comes to submit our response to the draft guidelines, I want to look at the list of names on our response and see individuals as well as a collective voice. That kind of meaningful impact gives those patients a legacy in the future of heart valve disease care and is the kind of meaningful patient impact that should be of great value to NICE when they review our response.