The hospital federations deplore the restrictions on access to the future file which will collect the health data of the French.
The new National Institute for Health Data (INDS) will have to do without the French hospital federations. In a press release, the FEHAP, the FHF, the FHP and UNICANCER express their anger at the conditions imposed by the Institute, “against” a desire for open-data.
However, “co-founders of the Institute for Health Data (IDS) since 2007, the hospital federations have supported the implementation of the sharing and opening of health data”, they write.
Shackles
However, the four organizations have so far been excluded from the open data system. “Restrictions on access to health data are imposed on hospital federations”, explain the authors of the press release.
In fact, the decree published in December 2016 relating to the future National Health Data System (SNDS), which will centralize health data, provides for unrestricted access to data for bodies exercising a public service mission. The State, Health Insurance, the National Agency for Medicines and Health Products Safety (ANSM), the High Authority for Health (HAS) or even the French Public Health Agency can access it permanently.
For the others, access to data is subject to stricter conditions, denounced by the four federations. The decree thus restricts access to health data for federations “and for 98% of hospitals and clinics by multiplying administrative obstacles”, they deplore.
“Unequal treatment”
“This situation generates an unacceptable inequality of treatment: other organizations, whose object is sometimes far removed from the field of health, are granted permanent access to the data”, further denounce the signatories of the press release.
The health data will be gathered in a file managed by the National Institute of Health Data, a new body to which the federations do not adhere. Its creation, according to them, “can only be seen as an excessive restriction of access to these data by State services in order to control its use and its users”.
Thus, the four hospital federations are asking the government to lift the restrictions on access to health data that weigh on hospitals. “The hospital federations wish to reaffirm the need, for their role of representation, monitoring and territorial analysis, of permanent and fluid access to health data”.
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