On World Heart Day 2019, Wil Woan, Chief Executive of Heart Valve Voice (UK) and John Lewis, Executive Director of Heart Valve Voice US, shared their plans for their organizations and how they are raising awareness of heart valve disease among patients, medical professionals, caregivers and policymakers.
What are the biggest barriers to treatment?
(UK) First and foremost for us it is awareness levels of the disease and its symptoms. Which is why we put so much emphasis on detection of the symptoms by the individual, clinicians and family members.
(US) Agreed. No one wakes up in the morning with chest pain and thinks “this must be my heart valve.”
(UK) Exactly – and too often we see people excusing symptoms away or changing habits based on breathlessness, dizziness and tiredness.
(US) This is why it’s important to spread awareness, it isn’t just the patient who can detect these symptoms, we need to be educating family members too.
(UK) And general practice physicians.
(US) Definitely. General practices need more education and training in how to detect heart valve disease and refer patients to proper specialists. We will be working on some professional education programs to address this.
(UK) It is something we are constantly looking for innovative ways to improve. We found great success in giving clinicians access to further information remotely through our webinars. It’s definitely a platform we will continue to utilise in the future.
(US) Another barrier we discovered in our research is that many patients who are diagnosed with heart valve disease never go back for treatment. Now, there could be several factors here -including access to care, lack of insurance, distance from an appropriate specialist or a lack of understanding about the risks of the disease as well as the treatment options for them. But it is certainly striking and crystallises the complex challenges we face.
(UK) Access is key here. Access to echo in the UK is poor. You simply cannot have situations where your likelihood to be detected and treated timely and effectively is determined by your address.
(US) Agreed. Awareness and access are our two biggest barriers. The challenges they present are complex but we continue to find new ways of tackling them.
Why do we have inequalities in access to treatments?
(UK) Inequalities in access to treatments are often location based. We see this as structural issues. This is why the National Guideline implementation is so important to us. There needs to be a fundamental standard of care that everyone works to and these improved procedures will increase access to treatment.
(US) We experience this too. In some communities a lack of awareness contributes to less access to innovative treatments. However, we also know that more innovative treatments, such as TAVR and TMVR, are available at a limited number of medical centres. These centres are often in more urban areas and, as a result, senior citizens and minority populations in rural areas have an additional distance burden when seeking care.
(UK)These access issues based on distance or lack of innovative technologies are why trials are so important. We need to be constantly thinking about ways of closing that distance. Trials give us different routes to access and can then inform National Guidelines.
(US) Structural differences between healthcare in our countries offer different problems. For instance, those under 65 are not covered by government Medicare programs, so they must rely on private health insurance. So in the US we may have a lack of insurance coverage, or high-cost coverage, that deters people from seeking treatment.
(UK) Cost is often central to access problems. What we need to convey is that the preventative measures are cheaper in the long run than the curative ones. Which is why we are focused on the implementation of National Guidelines.
Why is the role of the patient voice so important?
(UK) Patients play an incredibly important role in raising awareness. We have found that giving people the opportunity to listen to patients who have experienced heart valve disease and everything which it entails makes the information resonate more.
(US) Without doubt!
(UK) We’ve also found this sharing of information and experiences informs decision making for treatment options in new patients. As well offering reassurance and comfort to the loved ones of those effected by heart valve disease and more confidence in the care they will receive.
(US) I would also add the important role the patient can play in research and the in the design of clinical trials. A patient will advocate for outcome measures that are important to patients like quality of life measures that would fall outside the normal clinical practices.
(UK) Very true. Our patients have been instrumental in influencing decision makers and guiding policy too. People might not want to listen to me but there is no way they will ignore someone who has a lived experience of the problems associated with heart valve disease. Our patients voices have such power!!
(US) That power is invaluable and we are focused on harnessing it. Heart Valve Voice US recently received an award from the Patient Centered Outcomes Research Institute to train patients how to be meaningful participants in research. We will begin this training in 2020 and we are so excited about what we can achieve with it. We are building a network of patients who will be trained to make meaningful contributions to the design of research that will affect them and future patients.
(UK) Ultimately, our patients are our focus. They inspire us, but it is their capacity to inspire others to get checked and affect change in policy which make them so important. Our past, present and future patients will continue to strengthen our voice and help us make the changes we know are needed.
What activities do Heart Valve Voice have planned for the coming months?
(UK) The implementation of our Gold Standard of Care report is our primary focus. We’ve been working really hard with the health authorities and the wheels are certainly in motion for this report to become part of National Guidelines. There’s still plenty of work to be done but with the help of clinicians, patients and our supporters we will get there.
(US) Two of our main activities are the continued development of our patient-focused educational webinars and Public Service Announcements. At the moment we have produced two radio PSAs in English and Spanish and we’re hoping to develop one for television which we can then repurpose for social media.
(UK) We’ll certainly be looking at more webinars too. We’ll also be coming up with more innovative campaigns which increase awareness like our Community Detection campaigns – where education in the community will widen the scope of heart valve disease detection.
(US) Education is such an important part of increasing awareness. The webinars play a vital role in the increase of education and our Continuing Medical Education program will focus on improving detection and awareness among family physicians.
(UK) Look out for our Five Year Report too. That’ll look in depth at our upcoming goals.
(US) Another exciting development that I would urge people to look out for is a Heart Valve Disease Index which we are exploring developing with an impressive data platform. This could be used to identify disparities, costs, incidence as well as many other factors, and would be an extraordinary research tool for patients, clinicians and families.
(UK) That index could form a very important part of the future of heart valve disease in the US so we’re really excited to see where that goes and we’ll be looking to it to develop our own ideas too.
Where do you see valve disease on the cardiovascular landscape over the next 5 years?
(US) Our aim is that patients will be more aware and better informed through ours and our partners’ efforts. That they will be empowered to take more control over their treatment.
(UK) I think this building of alliances to strengthen our voice will be central to the future of valve disease in the cardiovascular landscape. I’ll be working closely with our European partners as well as Global Heart Hub to improve our educational resources and come up with more innovative methods of teaching and campaigning.
(US) Partnerships and alliances will certainly be an important means of strengthening our programs and will help us produce resources and implement new guidelines that will embed valve disease in the cardiovascular landscape.
(UK) Definitely, European Alliance Week will provide us with key partnerships which we can collaborate with for future research and campaigns.
(US) Knowledge and research is just so important. Improved knowledge gives patients a higher degree of control over their care and they will be better positioned to make more informed decisions about their best treatment options.
(UK) As well as providing the families with more comfort and confidence in the care being provided for their loved ones. I think our Power of Positive Ageing report will develop this further, as well as helping to reshape minds and perceptions of the ageing process itself.
(US) Certainly! Ultimately, as technology continues to evolve patients and families will rightly have higher expectations of care and the patient’s ability to live fulfilling lives with heart valve disease. Delivering these fulfilling lives will drive Heart Valve Voice over the next 5 years and longer and that will shape the cardiovascular landscape.
(UK) Totally agree with that. Delivering quality of life to our patients and giving more time to be spent with their loved ones will colour all that we do over the next 5 years and, help us shape the cardiovascular landscape so that patients themselves are the foundations of it.