One of the last workshops of the European Health Forum Gastein (EHFG) 2015 aimed to find answers to the question of how to empower the European patient through digital solutions and structured programmes.
The idea behind the workshop title “From Citizen to Citoyen” is explained by Angela Brand of the European Alliance for Personalised Medicine (EAPM). Only patients who are actively involved in their healthcare and in control over their data can become politically responsible citizens and hence “citoyens”, which means that they are able to shape the health system. However, an essential prerequisite for becoming a citoyen would be that patients have a better understanding of their disease, which means that improving health literacy is a necessary first step.
The entire panel, including Terje Peetso of DG CONNECT, Christian Franken of Apollon University of Applied Sciences, Germany, Max Müller of DocMorris, Tobias Gantner of HealthCare Futurists, and Kristine Sorensen of Maastricht University, agree that achieving greater health literacy is important and would have far reaching benefits. Greater health literacy would not only empower patients to become citoyens – it would also change the interaction between health professionals and patients. Potentially, this could transform medicine from eminence-based medicine to participative medicine, where patients would be able to take informed decisions about their own health.
Can digital solutions contribute to patient empowerment? Angela Brand says that innovations are often not welcome by patients and Christian Franken agrees that developers of technologies often do not understand the needs, fears, and demands of patients. This lack of understanding of what patients actually want, might explain the very limited use of health apps. In the Netherlands, 96% of the population use apps – but only 6% use ehealth apps. To change this, it would be important to involve also patients in the development of apps – and not only health professionals.
Max Müller raises an important complicating point: Healthy citizens do not care about health literacy. Only patients suffering from a disease have a desire to develop a better understanding of the disease. Yet, once the greatest suffering is gone, many patients are happy that they do not have to care about their disease. They are not interested to receive information about their disease via their smartphones – they prefer information about their football team. Therefore, if we want patients to be interested in receiving information, they would need to be “fans” of their conditions.
Kristine Sorensen, reminds the audience of how important it is to be informed. She refers to the hitchhiker’s guide to the galaxy, where the planet of the main character is to be destroyed because aliens plan to build an intergalactic highway. If the main character had known about this plan, it would have been possible to lodge a complaint against the planning decision at an office that was only a few lightyears away. This is to explain, how important it is to be informed – but coming back to patients: health literacy is light years away.
In summary, the entire panel agrees that health literacy and patient empowerment are important but that the path to get there is still a long one. My personal take-home message: despite technological advances and the ubiquity of information, health literacy and moving from citizen to citoyen are still a few lightyears away.