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Seminar on e-Health: Challenges and opportunities for families

On the 19th of April, COFACE and the FPS organised a seminar on e-Health at the European Social and Economic Committee. After an introductory speech by Maureen O'Neil, the EESC's Group III Vice-President, and Nicolas Revenu, Chair of the relevant COFACE working group, the seminar focused on four panel discussions which covered various stakeholders' perspectives and approaches to e-health. The two first panels were dedicated to actions by public authorities at both EU and national level and the two last panels encompassed the users, the providers, the medical staff and the social security's point of view and experience with e-health.

Several key points emerged from the input of the speakers and the participation of the audience:

- Much focus was given to the importance of user control and consent. Whether it was regarding the subscription and use of a digital medical record system or the use of e-monitoring, all stakeholders underlined the need for the user to be in control and giving explicit consent to the use of these new technologies. Nothing should be forced upon a patient or a user.

- The need for an increased consultation and participation of civil society, and especially the users and their family, has been stressed by many stakeholders including the EU Commission's representatives. Questions such as the depersonalisation of healthcare, e-inclusion, user/patient consent and data protection and privacy need to be addressed by consulting civil society representatives to ensure a broad acceptance and adherence to the way e-health is implemented at local, regional and national level.

- One size does not fit all. While new technologies such as those used in e-health can provide many benefits for users/patients, their families and the relevant healthcare providers, this does not mean that all users/patients and all families would opt for using them as opposed to alternative solutions such as traditional care. Elderly people are a case in point, with many elderly people being enthusiastic about e-health but also many quite sceptical and unwilling to use new technologies.

- E-health is extremely diverse in scope. From the various interventions, it was clear that e-health can take many different forms, be it via large scale projects such as creating a national digital medical file or smaller scale, civil society lead initiatives such as creating an online platform to exchange and inform oneself about health related matters or products developed by the industry such as e-monitoring devices.

- Empowering and informing users/patients, their families and healthcare providers has also been identified as key in order to increase the awareness about what possibilities e-health can offer but also to properly weigh the potential challenges that may arise with regards to data protection and privacy, depersonalisation of care, cost and so forth.

- Recognising that technology cannot replace people but can be an added value. Many participants expressed their fear that e-health might mean less social and direct human contact between users/patients, their families and the healthcare providers' caring and medical staff. It may also be the cause of increased social exclusion. It is therefore in the hands of public authorities to design the right strategy on how to set up and make use of e-health.

- Finally, from a family organisations' perspective, COFACE underlined the need to consult family organisationssince family members mostly end up being informal carers and are also affected by e-health.

Programme

Presentations:

Introduction by Nicolas Revenu, President of the COFACE Working Group on Consumer protection, Services, Public Health and Sustainable development policies

What does Europe do?
European Innovation Partnership on Active and Healthy Ageing by Petra Leroy Cadova, DG Health and Consumers
Innovation in eHealth: European Commission Policy Agenda by Pēteris Zilgalvis, J.D., ICT for Health, DG Infso

Practical applications in Member states
The centralised medical file - What content, what use and what about privacy? by Jeanne Bossi, ASIP-Santé
The centralised medical file in Belgium by André Vandenberghe, Réseau Santé Wallon, BE

The users and providers’ point of view
Presentation of the «Family-Net»project by Juulia Ukkonen, Väestöliitto, The Family Federation of Finland
An overview of users’ acceptance of E-Health by Nathalie Tellier, UNAF, FR
E-monitoring and distance care: older people’s views and future perspectives by Heidrun Mollenkopf, chair of the expert group on ICT, AGE-Platform Europe
E-Health-enabled Innovative Care Model by Marc Lange, EHTEL, European Health Telematics Association

Challenges for society and healthcare providers
E-Health - What are the barriers to implementation and trust? by Dr Michael Wilks, CPME Executive Committee and Chair of the eHealth Working Group
E-Health: Challenges for social security and society by Jean-Marc Laasman, Research coordinator of the Mutualités socialistes