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