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