CVD is the most prevalent disease in Europe
Most recent data from the Global Burden of Disease database estimate that, in the EU, more than 60 million people live with cardiovascular diseases (CVD) and that close to 13 million new cases of CVD are diagnosed every year.
Patient organizations such as the German Heart Foundation (GHF) try to raise awareness in the public on how to prevent and treat CVD, inform the patients about best therapy options, and fund, promote or are actively involved in research projects.
In Germany, the GHF is the largest patient organisation in the field of cardiovascular diseases and has currently more than 100,000 members. The GHF also works closely together with the European Heart Network, a Brussels-based alliance which represents foundations and patient associations active in cardiovascular disease, with a reach out to more than 2 million patients and carers in Europe.
Why patient involvement should be Golden Standard
Listening to all stakeholders and incorporating their views and expertise from the very beginning allows patients to express their needs, concerns, and expectations. This can lead to a greater benefit and at the same time, contribute to a stronger European Health Union. In this context, the role of patient organisations is crucial since they bridge the gap between hospitals, scientists and patients.
Patient involvement in different fields of research has finally become a reality. In the past, patients have been only addressed as research subjects in clinical trials or related studies. Their views as a lay-person, but directly affected patient haven’t been considered. Recently, the perspective has fortunately changed: The common understanding now is to incorporate patient’s views and concerns for a better, more realistic and holistic approach. And there are, indeed, different fields where patients or patient’s representatives can be involved, from communication, study design, setting research priorities, to assessment of value patient-relevant outcomes. Moreover, patients can influence the research agenda by identifying, from their perspective, unmet research needs which should finally be reflected also in guidelines and on the political agenda.
Patients are considered as experts of their disease and their involvement in a clinical research project positively contributes to a patient-centred, strong and sustainable healthcare in Europe!
Patient Communication within the PROFID Project
Patients are in general very interested in latest scientific developments and patient-centred research. In PROFID, there is a direct focus on patients: The project aims for a better protection for patients at risk and at the same time to avoid uselessly implanted defibrillators. As partner of the PROFID consortium, the German Heart Foundation has informed the German CVD patients in the Foundation’s member magazine Herz heute (circulation: 160,000) about PROFID’s planned and ongoing activities.
Communicating to the patients in lay-language is key. This is also the reason why the German Heart Foundation supports the leading work package partners in preparing documents or information kits addressed to patients. Only if the patient fully understands the project’s scope, s/he will be able to discuss possible participation with the treating physician and decide what is best for her or him. Language or educational skills never mustn’t be a barrier.
The German Heart Foundation will continue to regularly inform the patients about the ongoing of the project and will later disseminate the results in the GHF’s communication channels (magazine, website, social media, press release, podcast, virtual online seminar or face to face event).
In the last months, the GHF has also used several opportunities to introduce PROFID to various national and international stakeholders. Christine Dehn, working in Patient Representation and EU Affairs at the German Heart Foundation, e.g. briefly presented the PROFID project at the Members of the European Parliament (MEP) Heart Group online meeting on 28 June 2021. In the context of research funding landscape, she emphasised the importance of listening to the patient’s voice and funding innovations that have an impact on their life and life-quality.