The Global Heart Hub is empowering patients to play a central role in improving their health care. Its founder, Neil Johnson, sees opportunities for medtech and digital health companies to engage with people affected by cardiovascular disease – but the sector has some catching up to do
Cardiovascular diseases (CVD) are the leading cause of death globally. While the mortality rate in Europe and the US is falling thanks to improved treatments, the number of people living with conditions such as heart failure continues to grow.
Despite this, people affected by CVD tend not to be as influential and well-networked as those affected by other major disease types, including cancer and diabetes. This prompted Neil Johnson, an established advocate for people with heart disease and stroke, to launch the Global Heart Hub (GHH) in 2019.
The GHH aims to bring patients together, empower them to navigate the health system, and become advocates for better care. ‘We are connecting a huge community whose voice has been absent for too long,’ explains Johnson. ‘Cardiovascular disease is lagging behind other disease areas and it is in everyone’s interest that we catch up quickly.’
Exciting developments in medical technologies, digital devices and pharmaceuticals demand patient input at the product development and reimbursement stages as well as in policy debates and clinical decision-making. But while the rhetoric of patient-centricity has taken root, it is not always matched by action.
‘The patient is still the weakest link in the ecosystem – they have the least power and fewest resources,’ he says. ‘But the world is changing: patients have access to more information than ever. They are more discerning than in the past. They compare technologies and express preferences, so clinicians and companies need to adapt.’
Building alliances
Johnson’s own journey to patient advocacy began in early 1993 with CROI, an Irish charity founded to enhance cardiology infrastructure in the westernmost region of Europe. CROI’s ongoing work to promote screening, behaviour change, disease management and rehabilitation highlighted the need for local advocacy in an under-served area but also pointed to a need to go global. The GHH now connects almost 70 organisations in most regions of the world, promoting health as a human right.
The alliance brings together working groups on key areas of interest in heart health, establishing Councils to conduct formal projects. In its first two years, it has set up councils focusing on heart failure and valve disease, while convening working groups on cardiomyopathy, cardio diabetes, and women and heart disease. These groups work together on raising disease awareness and building capacity among members to engage with other key actors in the health system.
The Valve Council has commissioned an independent mapping of the patient journey for people in Europe with valve disease. Validated by a panel of clinical expertise, it reveals variations across Europe and highlights gaps that must be addressed to ensure patients everywhere can access the best care.
Its patient-led COVID-19 response campaigns, Just Go, Step Up and Just Treat are using traditional and social media to encourage patients to seek treatment at the first sign of trouble. ‘Heart disease patients stopped going to their doctor or the hospital during the pandemic for fear of contracting COVID-19 and this had serious consequences for some,’ Johnson said. ‘The natural burden of CVD, plus a backlog of appointments and deterioration of those on waiting lists mean we have a tsunami of chronic CVD coming down the line.’
‘Start with the end user’
Collaborating with industry partners is an important element of the work of the GHH. From product development to the collection of real-world data after technologies have been approved, the role of patients is likely to grow. ‘We have support from pharma and medtech underpinned by arms-length contracts specifying the roles and responsibilities of each partner,’ Johnson says. ‘From the beginning, we’ve had a Code of Ethics to guide these relationships.’
While some in the pharmaceutical industry already see value in working with patient advocates, it is still early days for companies making devices, diagnostics and digital tools. Many have yet to adapt to a changing world where informed patients behave more like consumers.
‘For years, companies and clinicians decided patient priorities for them, but that has been changing,’ Johnson says. ‘In medtech, my sense is that companies still view patient involvement from a commercial point of view rather than as collaborators. Countless devices have been developed without consultation, requiring developers to go back to the drawing board when they eventually find that their product doesn’t suit patients.’
The same goes for digital. While development times can be rapid – much faster than for medicines – apps, wearables and connected devices should be co-created with patients, he says: ‘It’s a no brainer: start with the end-user.’
Digital technologies could help to improve services and outcomes, empowering patients to manage more of their own care, but Johnson sounds a note of caution. ‘It’s not a panacea. Great technology is no good if patients do not have broadband or lack the digital literacy skills to use the devices,’ he says. ‘And although virtual clinics may be fast and efficient, they need to be evaluated to determine whether they are really delivering quality for patients. That question must be asked.’
Through the GHH, more patients will be ready to answer these kinds of questions. In a fast-moving field, the task of connecting the enormous global community of CVD patients and carers may be great, but Johnson sees strength in numbers. ‘We want to create a situation where patients realise the power of their lived experience and bring this to the wider cardiovascular community.’
