Heart Valve Voice Blog
Tuesday 1st October 2019
Wil is writing a fortnightly blog and discussing a range of topics over the coming months. In this addition, he's talking about the role of Heart Valve Voice in the cardiovascular landscape, so much of the discussion is about awareness. For us, there are three important parts to this: education, reach and collaboration. .
We see research and campaigning to be central components to effective awareness strategies. Research allows us to produce the most informed and effective educational materials, with campaigning a means of reaching as many people as possible with our information
The reason awareness is central to what Heart Valve Voice does is laid bare in the number of EU Heart Health Survey of over 65s that we’ve carried out of the past years. Huge numbers of respondents didn’t know what aortic stenosis was, vey few recognised heart valve disease as a major health concern and over half of the people questioned did not receive regular stethoscope checks when visiting their GP.
This shows that people need to be educated on the risks of heart valve disease to guarantee they are conscious of symptoms and risks, but also that the culture in local GP’s needs to change to ensure over 65s are receiving regular stethoscope checks, and the implementation of our Gold Standard of Care would affect change in this culture.
Heart Valve Disease Awareness Week (Sept 16th-22nd) is a campaign which is of huge importance to both our research and reach.
In order to maximise awareness, you have to diversify your campaigning. Our voice must be everywhere and during Heart Valve Disease Awareness Week, it was.
On the streets of London, Belfast and Edinburgh, armed with our Street Doctors, we were talking to people about valve disease and listening to hearts. We were in classrooms, with over a hundred schools reading our My Grandad’s Heart Valve Disease Story. We were online, both with Silversurfers and our webinars, allowing us to remotely educate patients, clinicians and family members from the comfort of their work or home.
All week we were able to reach people of all ages in all areas of the country through the diversification of our campaigning.
Our Street Doctors were an excellent example of the importance of innovation and creativity in increasing awareness. We introduced the carnival to London, Edinburgh and Belfast - and it was a roaring success.
People are sometimes reluctant to engage when approached in public, so a different approach is needed to change that initial contact. Our Street Doctors did just that. They encouraged people to approach us, changing the shape of our interactions and increasing our reach exponentially. Who would have thought 12ft tall doctors would make people want to talk about heart valve disease?!
Watch our video about Heart Valve Disease Awareness Week here.
Heart Valve Disease Awareness Week was a brilliant opportunity to get heart valve disease to the centre of the conversation, and with National Heart Day (Sept 29th) coming so soon after it made September an important, and occasionally manic, month for us.
As part of National Heart Day, I had a discussion with the CEO of Heart Valve Voice US about awareness campaigns and problems we both face. We work closely with each other to improve our information and come up with innovative ways of increasing awareness of valve disease. We face some different challenges to our friends across the ocean, but the sharing of information, experiences and ideas allows us to improve our materials, methods and techniques
You can read what we spoke about here.
The sharing of information is key to improving our campaigns because our accumulation of knowledge, educational materials and campaign ideas is improved by our collaborations and alliances. We put our patients’ voice at the centre of what we do because we understand that the more voices we have, the louder we are. Equally, collaborations with international charities strengthens this voice, something I have seen first-hand through my work with Global Heart Hub.
Global Heart Hub is the first global non-profit organisation to provide a voice for those affected by cardiovascular disease, uniting patient groups from across the world under the umbrella of Global Heart Hub.
The foundations of Global Heart Hub are a series of different Patient Councils, each of which is an alliance of patient organisations who have a common interest in a specific cardiovascular condition. Our Global Heart Valve Disease Patient Council connects our patients with other patients from across the globe and puts the patients at the forefront as together we shape the global cardiovascular landscape.
If you’re interested in working with a Patient Council in your area, you can register here.
This platform for patients and organisations to share their views allows us to learn from each other, share resources and unite on common advocacy goals. With education so central to what we do our capacity to share information globally and utilise each other’s strengths will be a vital resource in the future detection of heart valve disease and access to innovative treatments - as well as improving patient and family confidence in care.
Our awareness campaigning takes many forms. We are on the streets, online, in the press and even at The Ashes! All of this is with the central purpose of national structural changes. The more we increase the range and effectiveness of our awareness campaigns, the greater our capacity to affect national change. Once we change the structures, then we will improve detection and treatment of heart valve disease, improving patient care, their lives and the lives of their loved ones.
Our #valvediseaseblog is written by our CEO, Wil Woan