- Sarah Harwood, UK – patient with Chronic Kidney Disease
- Nick Hartshorne-Evans, UK – Chief Executive (Founder) of Pumping Marvellous Foundation, for Heart Failure
- Peter Verhoeven, The Netherlands – founder of Vasculitis International and of Head of Vasculitis Stichting, for ANCA-Associated Vasculitis
Although the situation has been difficult for them to deal with, our patients provided us with an optimistic note: the crisis can be an opportunity for change, for developing new digital health solutions, for empowering patients to be more proactive, and get the industry to do things differently.
How did patients deal with COVID-19?
During this unprecedented circumstances, each of us has been challenged to redefine new ways of managing our professional and private life. But for the patients we serve, the challenge also consists in dealing with the burden of a disease that put them at higher risk for their health and well-being. The period of Coronavirus somehow highlighted the vulnerable condition in which patients live, as they had to stay home and avoid social interactions more than ever, especially if under immune-suppression treatments:
“The situation definitely created panic and anxiety. I don’t really like to think of myself as vulnerable. It sure applies but I don’t like it. We fought so hard to be independent and to be able to live our lives without relying on other people or to see ourselves as patients. I don’t feel like a patient physically, actually I’ve never felt this healthy in my life before, but this situation made me feel as a patient mentally, it made me feel vulnerable and it is difficult to deal with that mindset” commented Sarah Harwood.
Are Patient Empowerment and new digital health solutions important during this period?
To avoid the risk of coronavirus, many patients have been avoiding visits to their doctors. However by doing this, they may in fact increase the risk of worsening their condition:
“I think it is important to have phone calls and video calls. A lot of doctors are adopting this change in practice and this seems to be a long-term solution that can remain in place even beyond COVID-19, because for CKD patients on immune-suppression going visiting the doctor is not only about the risk of catching COVID but also other infections. So patients need to be more proactive, they need to contact the doctor and take more responsibility by making the call, asking questions and saying why they are worried”, said Sarah Harwood.
This unprecedented situation is both pushing doctors to change the way they provide support and healthcare services to their patients, and it impacts the way Patient Associations work, as they can communicate with their patients only virtually and rely on digital tools to fill that information gap. New digital health solutions are needed, especially to facilitate older patients to gather information and online support, so that they don’t feel left out of the conversation:
“The problem is that not many of them are able to use devices such as tablets or smartphones. We are currently thinking of training them to use these devices, so that they can easily join a webinar or gather information. This crisis showed us that now more than ever new e-health tools are needed”, said Peter Verhoeven.health tools are needed”, said Peter Verhoeven.
How can Life Science actors help?
Although funding represents an important way in which Life Science companies and institution can support patients worldwide, the approach should be more comprehensive:
“I think life science companies and also tech companies have the responsibility as much as people in academia, patients groups, doctors and nurses of raising the profile of doing things differently and doing things better. Probably this was a reset. They all should help in improving care, communication, treatments and should be real partners in the conversation rather than being mere suppliers” commented Nick Hartshorne-Evans.