How to provide access to patients health data

Should state-held health data be cent­ral­ised? In 2019, the French gov­ern­ment launched the Health Data Hub with a budget of €10 mil­lion¹ to provide access to health data for both research and busi­ness and thus accel­er­ate innov­a­tion. This pro­ject was stopped dead in its tracks in Janu­ary this year fol­low­ing the with­draw­al of the Health Data Hub’s request for author­isa­tion from the CNIL. Emmanuel Didi­er, a mem­ber of the Nation­al Con­sultat­ive Eth­ics Com­mit­tee, which will issue an opin­ion on the sub­ject in the com­ing months, looks back at the cre­ation and imple­ment­a­tion of the Health Data Hub. 

The Health Data Hub, the cent­ral­isa­tion of data from the French Nation­al Health Insur­ance and some forty oth­er data­bases, will make doc­tors’ work easi­er by pool­ing health data. It will also be a very rich source for research­ers. Moreover, it will open up a pro­lif­ic new mar­ket for com­pan­ies. The gov­ern­ment’s inten­tion is to cre­ate a space con­du­cive to innov­a­tion in the health sec­tor to enable the cre­ation of new uni­corns, start-ups val­ued at more than one bil­lion euros (Doc­tolib, for example) that are sup­posed to rival the Amer­ic­an digit­al giants (GAFAM). 

In order to access this data, parties must pro­pose a pro­ject explain­ing what the data will be used for. The hope lies in the cross-ref­er­en­cing of data, which would open up new pos­sib­il­it­ies for mon­it­or­ing and man­aging care. An example in this area is elec­tro­car­di­o­grams; there are sev­er­al soft­ware pro­grams for recov­er­ing elec­tro­car­di­o­grams. Cent­ral­ising the data would make it pos­sible to use a single soft­ware pack­age for more flu­id exchanges between the vari­ous car­di­ology centres while offer­ing bet­ter adap­ted care to patients.

France is a coun­try whose health sys­tem is suit­able for a pro­ject such as the Health Data Hub. Indeed, the amount of health data in France is colossal: the Sniiram (the nation­al inter-regime inform­a­tion sys­tem of the French health insur­ance sys­tem) holds 1.2 bil­lion med­ic­al records col­lec­ted since 2002². In coun­tries such as Ger­many and the United States, the health sys­tem is divided into sev­er­al parts. In Ger­many, the Länder (admin­is­trat­ive regions) man­age their own health care sys­tem, in the United States, the states via the insur­ance com­pan­ies. Hence, cent­ral­ising data must be organ­ised in a dif­fer­ent way than in France, where it is man­aged by the State.

The hope lies in the cross-ref­er­en­cing of data, which would open up new pos­sib­il­it­ies for mon­it­or­ing and man­aging care.

How­ever, oth­er coun­tries have a health sys­tem sim­il­ar to ours and could even­tu­ally launch this type of pro­ject. This is the case in the United King­dom where the Bio Bank is already at the heart of research into cent­ral­isa­tion. This is also what Europe has in mind with its European Health Data Space. This space cor­res­ponds to a European desire to share health data in order to facil­it­ate research and improve health sys­tems as a whole. The aim is to build large-scale arti­fi­cial intel­li­gence algorithms to man­age crises such as Cov­id-19³.

Cent­ral­isa­tion poses a prob­lem for cer­tain act­ors who do not want to entrust their data­bases at the risk of los­ing the work inves­ted in them. Con­stance, a French epi­demi­olo­gic­al cohort, for example, has spe­cif­ic access con­di­tions for the large amount of data it holds and has made it clear to the Health Data Hub that it does not want to share them⁴. Anoth­er cri­ti­cism con­cerns the enrich­ment of private act­ors with the health data of oth­ers. In France, it is for­bid­den to use health data for mar­ket­ing or insur­ance pur­poses. How­ever, the Health Data Hub offers a new play­ground for innov­at­ive com­pan­ies who could use it to make a profit. Finally, the host­ing of data by Amer­ic­an serv­ers (Microsoft) poses a sov­er­eignty prob­lem. The object­ive could have or could allow the cre­ation of a French or European host. We do not yet know what dir­ec­tion the Health Data Hub will take.

One of the solu­tions put for­ward would be to frag­ment health data while mak­ing it access­ible to all. Instead of hav­ing a single Health Data Hub, we could have sev­er­al spread through­out France allow­ing com­pan­ies and oth­er groups with large amounts of data to store it while shar­ing it with as many people as pos­sible. This solu­tion is also more secure because for any hack­ing there would be sev­er­al stor­age spaces to attack. In fact, hack­ers would not be able to get their hands on all the data at once as they would with a single cent­ral­ized data­base. But this is only one of the pos­sible solutions.

Interview by Fabien Roches