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Digital innovations for better health

How to provide access to patients health data

On April 27th, 2022 |
3 mins reading time
3
How to provide access to patients health data
Emmanuel Didier (2)
Emmanuel Didier
Sociologist, CNRS Research Director and member of the Maurice Halbwachs Centre at EHESS
Key takeaways
  • The Health Data Hub is a French project with a budget of almost €10 million which aims to centralise all health data in France.
  • This project will make doctors; work easier thanks to the pooling of health data, but it will also open up a new market for companies.
  • 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 2002.
  • However, centralisation poses a problem for some parties who do not want to entrust their databases at the risk of losing the work invested in them. This is the case for the Constance cohort which has a large quantity of data.
  • Other criticisms revolve around the project, notably the very principle of centralisation or the question of hosting, which would be done by Microsoft.

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. 

How can data be useful for health?

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.

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

Are there similar projects in other countries?

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.

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.

What are the criticisms of this project?

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.

What are the possible solutions for the future of the Health Data Hub? 

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
1https://​www​.legifrance​.gouv​.fr/​j​o​r​f​/​i​d​/​J​O​R​F​T​E​X​T​0​0​0​0​4​1​7​74001
2https://​assur​ance​-mal​adie​.ameli​.fr/​e​t​u​d​e​s​-​e​t​-​d​o​n​n​e​e​s​/​p​r​e​s​e​n​t​a​t​i​o​n​-​s​y​s​t​e​m​e​-​n​a​t​i​o​n​a​l​-​d​o​n​n​e​e​s​-​s​a​n​t​e​-snds
3 https://​www​.health​-data​-hub​.fr/​a​c​t​u​a​l​i​t​e​s​/​h​d​h​-ehds
4 https://​www​.con​stances​.fr