Publications

Patients in the driving seat: How to make eHealth participatory?

2016 eHealth Week took place on 8-10 June in Amsterdam, organised under the Dutch Council Presidency. Under the banner “You, at the heart of transition”, the event displayed a much stronger focus on the needs of patients and vulnerable groups than previous editions. EPHA welcomes this patient-centric approach but stresses that the needs of all end users – including also health professionals, health system managers, and ordinary people – need to be considered in the evolving debates around e- and mHealth as equal partners.

A side session “Healthy minds for everyone in the 21st Century – Emotional and Mental Health through digital programs” showcased relevant e-Mental Health technologies and best practices used in the Dutch healthcare system to prevent and treat conditions. These included solutions, including eTherapy and virtual reality (VR), which offer scenarios that can help patients overcome depression, phobias and (social) anxieties. The relevance cannot be ignored: The World Health Organisation  predicts that, by 2020, depression will be the second leading contributor to the global burden of disease across all ages. Hence it will become increasingly important to offer easily accessible, mobile solutions that allow their users – who are particularly prone to stigma and exclusion – to maintain their anonymity.

Trust remains one of the key barriers to mHealth uptake – can voluntary industry initiatives help solve trust issues or is there a case to be made for expanding EU competences in the digital sphere? During a session on the new Privacy Code of Conduct on mHealth apps – which covers key data protection principles to be followed by app developers, Peteris Zilgalvis (DG CONNECT) provided an update on the final version of the Code, and representatives of patient organisations and other stakeholders jointly discussed the benefits and limits of “soft law” approaches for enhancing trust given the growing importance ascribed to such tools under the General Data Protection Regulation.

Another session, co-chaired by Catherine Chronaki, Scientific Coordinator, eStandards Project & Secretary General of the HL7 Foundation and Anne Moen, President of the European Federation for Medical Informatics  and including a presentation by eHealth expert Dr Petra Wilson, discussed the fact that, despite extensive investments in digital health technology, navigating the health system online remains challenging for most citizens who come from different socio-economic backgrounds and also have different levels of digital health literacy. Barriers and challenges include culture, education, skills, costs, perceptions of power and role, all of which are essential when considering effective multidisciplinary action. The premise of the session was that various types of end users, including carers, patients with implanted devices, chronic disease patients (e.g. diabetes), children and the elderly, as well as ordinary people engaged in self-care, might benefit from having their own “Digital Health Compass” that would help them to come to grips with the complexity of online health environments. New insights from the discipline of health informatics and the potential role of digital health standards were also discussed, e.g. in the context of developing targeted yet very accessible digital health literacy interventions.

Finally, the issue of eHealth and health inequalities was taken up in a session entitled eHealth Equity: how to meet the needs of people with poor health literacy? eHealth holds great potential to contribute to the attainment of universal health coverage, however digital health literacy and eHealth competences vary greatly between social groups. Patients require comprehensible health information geared to their level in order to be able to take a joint decision about treatment and care. In the USA and in Europe, solutions are emerging that specifically aim at members of vulnerable groups, including refugees and asylum seekers, ethnic minorities and individuals with lower educational attainment, to become part of the eHealth landscape and obtain targeted information that is relevant to them and will improve their health outcomes, which should be ultimate goal of digital health technology.

Related Article

Press Release| eHealth: Opportunity or threat to health equity for all?

Get the EPHA Newsletter

Get involved !

Get involved !

Sign up here to receive our updates on European health policy and invitations to our events.

Subscribe now

You have Successfully Subscribed!

Share This