E-health: real services responding to real needs

Points of view | 14 Mar 2012
Points of view of Magali Leo, CISS representative (the French federation of healthcare users)

E-health is made up of a range of digital and multimedia services, which, if they did not involve private and fundamental areas of life, could be developed and adopted just like any other application. They would be useful and above all accessible commodities for those with access to a computer or smartphone and the Internet, and with the insurance policy to fund it all.

If they did not involve private and fundamental areas of life, such products would certainly be marketed with accessories to help us live longer, healthier lives, with cheap gadgets and accompanied by aggressive advertising.

Again, if they did not involve private and fundamental areas of life, the initiative in e-health could be taken, not by medically qualified people, but by those in industry for whom health is a determinant of purchasing that is likely to maximise their profits.

It is precisely because e-health involves such private and fundamental aspects of life that the authorities must design policies to roll it out in a responsible and measured way, and such that everyone involved is committed unconditionally to respecting users' rights. Technological progress is an opportunity to modernise French approaches to health, whether this be health promotion using online support and coaching services, or access to care, as in the case of telemedicine. The latter is undergoing formalised legal definition in which individual rights will be protected, and in this way it differs from telehealth. But we do know that just because an industry is mature this does not necessarily mean that the population will embrace the new methods or that the proposed services will succeed, as shown by the shelving of Google Health medical records on 1 January 2012 because of "limited use", as Google itself admitted.

This failure shows us e-health services should not be developed on the basis of creating needs out of thin air. Starting from what users expect from new healthcare services is an approach that is more likely to be successful. The result will be generally applicable, robust and legally sound solutions, rather than sophisticated products that are unsuited to actual patient needs. The current situation is rather far from this. In any event, such solutions, whether in telehealth or telemedicine, cannot dispense with the need to add value to the medical or health systems, without which they will not sell to individuals, health insurance systems or associated organizations.

The French federation of healthcare users (CISS) brings together around forty associations, which for a variety of reasons are supporting the development of digital ways of enabling healthcare users to obtain better monitoring, better care, and better management.  But this requires regulation of the whole area, for four reasons: identity theft protection (this is currently non-existent, while we should be preventing a future scandal at any cost); data protection, the domain of the French council on freedom of information and data protection (CNIL), which must be provided with increased resources; ethics of digital relationships in a transactional context such as medical services, which is as yet poorly understood; and stimulation of digital solutions in health, which are needed if we are not to worsen existing levels of health inequality.

About...

The French federation of healthcare users (CISS) brings together nearly 40 associations that are involved in health. CISS aims to provide advocacy and advice for all users, whether in terms of rights of access to care or demands to place individuals at the centre of the healthcare system. It seeks to act collectively and in a spirit of solidarity, to guarantee access for all to high-quality care.

Extract from the ASIP Santé's Annual Report 2011.