Dear HIFA colleagues,

(with thanks to Isabelle Wachsmuth and HIFA-French)

I was interested to read this paper from the French Agency for Digital Health. It links health information, democracy and people-centred care. The full text (in French) is available here:

Below are extracts auto-translated into English:

‘We are entering a new digital age of health democracy. This surplus of democracy is a new opening towards the implication of the patients, the taking into account of their needs and consequently, of a better efficiency of our system of health.

‘The State has already developed the first digital tools of health democracy. The Public Health Information Service (SPIS) was born from the law of modernization of the health system. The ability of citizens to make informed choices about their health depends on their access to quality, independent and transparent information. However, the development of digital spaces produces a proliferation of data of uneven quality, sometimes insufficient or contradictory, even erroneous. This is why the SPIS has identified criteria to ensure users a space of confidence that guarantees the quality of the information offered. The first of these criteria concerns the accessibility of information, because sometimes language is the first barrier. The second touches the actionable nature of the information, so that everyone can make informed choices. In its approach of offering reliable, accessible and independent information, the SPIS relies on, a portal allowing access to knowledge about health and the offer of care in a personalized way. SPIS is designed to remove inconsistencies in information that could prevent users from becoming involved in their journey and to promote their evaluation of the system…

Digital technology is a lever of health democracy. It can reach the most isolated people geographically or culturally, and it promotes the steps of co-construction.

However, health democracy is not a given, it is a process. It remains for him to deepen and settle in the long term. But the law is not enough. The law establishes the framework, but the reality of health democracy is first and foremost a profound cultural change. Evolution of citizens first with education and health promotion provided at the earliest at school. We know that information is one of the determinants of health and that certain behaviors are also one of the determinants of health. On the other hand, let us go further in the professionalization of user representatives: the creation of UNAASS is a strong signal in the training of users. We hope that this will allow the militants to multiply their impact. In the case of expert patients, if they had a real status, their contribution could further help the system to better take into account the experiences and choices of patients. Health citizenship remains to be built in a more systemic way.

Evolution of health professionals then, with the introduction of shared decision making in health care at the heart of initial and lifelong courses… Shared decision-making makes it possible to improve the patient’s information and to respect his autonomy by involving him in treatment decisions. Health democracy can not be done without health professionals…’

Best wishes, Neil

Coordinator, HIFA Project on Information for Citizens, Parents and Children:

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