Inter­pel­la­ti­on Reynard (19.3330): Should pati­ent data be sold to the hig­hest bidder?

Inter­pel­la­ti­on Reynard (19.3330): Should pati­ent data be sold to the hig­hest bidder?

Sub­mit­ted text

I would ask the Federal Coun­cil to ans­wer the fol­lo­wing questions:

What exact­ly is the mis­si­on of the Digi­tal Trans­for­ma­ti­on Advi­so­ry Board? How was the advi­so­ry board con­sti­tuted, with a view to what outcome?

2. the­re are very important issu­es at sta­ke that affect the pri­va­te lives of con­su­mers and peop­le who use care ser­vices. Kno­wing this, why were the pati­ent pro­tec­tion, con­su­mer pro­tec­tion and data pro­tec­tion asso­cia­ti­ons not invi­ted to a sin­gle mee­ting? Was the Federal Data Pro­tec­tion and Infor­ma­ti­on Com­mis­sio­ner invited?

3. is the Federal Coun­cil con­si­de­ring the pos­si­bi­li­ty of per­mit­ting the com­mer­cia­liz­a­ti­on of per­so­nal data, in par­ti­cu­lar from the elec­tro­nic pati­ent file? If so, on what legal basis, for what pur­po­se and with what restrictions?

4. Is the Federal Coun­cil in favor, for examp­le, of lowe­ring health insuran­ce pre­mi­ums for pati­ents who agree to share their data with an insuran­ce com­pa­ny? If so, what about the soli­da­ri­ty principle?

Justi­fi­ca­ti­on

On June 12, 2017, the Federal Coun­cil announ­ced the crea­ti­on of the Digi­tal Trans­for­ma­ti­on Advi­so­ry Board under the joint lea­dership of the EAER and DETEC. This body brings tog­e­ther repre­sen­ta­ti­ves from busi­ness, poli­tics and sci­ence to pro­mo­te the exchan­ge of views on cyber­se­cu­ri­ty, the crea­ti­on of clu­sters and the dis­se­mi­na­ti­on of per­so­nal data. The­se are thor­ny issu­es. While the poten­ti­al is extre­me­ly pro­mi­sing, the use of data, its dis­se­mi­na­ti­on and com­mer­cia­liz­a­ti­on are also a thre­at to privacy.

At the end of Febru­a­ry 2019, the press repor­ted on the fifth mee­ting of the Advi­so­ry Board, which took place on Octo­ber 25, 2018. From this it emer­ged that in some cases the­re is litt­le con­cern for the pro­tec­tion of pri­va­cy. The head of one com­pa­ny even went so far as to call it an unnecessa­ry luxu­ry. In this sen­se, it can be assu­med that the Federal Coun­cil is rather posi­tively dis­po­sed toward the pos­si­bi­li­ty of pati­ents and per­sons clai­ming care sel­ling their data, espe­cial­ly data that will be con­tai­ned in the elec­tro­nic pati­ent dos­sier in the future, which will be man­da­to­ry in hospi­tals from spring 2020.

State­ment of the Federal Coun­cil from 22.5.2019

1 The Digi­tal Trans­for­ma­ti­on Advi­so­ry Coun­cil was set up by Pre­si­dent Doris Leu­thard and Federal Coun­cil­lor Johann Schnei­der-Ammann and is chai­red by the rele­vant federal coun­cil­lors. The advi­so­ry board ser­ves as a forum for exchan­ge bet­ween poli­tics, busi­ness and sci­ence and for con­sul­ta­ti­on on important digi­ta­liz­a­ti­on issu­es. It is con­ve­ned several times a year and is made up of repre­sen­ta­ti­ves from com­pa­nies, edu­ca­tio­nal insti­tu­ti­ons and asso­cia­ti­ons, alt­hough the group of par­ti­ci­pants may vary depen­ding on the topic.

2 The Digi­tal Trans­for­ma­ti­on Advi­so­ry Board held its first con­sti­tu­ent mee­ting on June 12, 2017. This is an advi­so­ry body of experts and not a con­sul­ta­ti­on or hea­ring body. No deci­si­ons are made. The per­ma­nent mem­bers of the Advi­so­ry Board were appoin­ted ad per­so­nam for this pur­po­se. Depen­ding on the topic, addi­tio­nal par­ti­ci­pants may be invi­ted: Pati­ent, con­su­mer and data pro­tec­tion repre­sen­ta­ti­ves are inclu­ded depen­ding on the topic. For examp­le, data pro­tec­tion and data use were core topics at the mee­ting on March 11, 2019, which was atten­ded by the Federal Data Pro­tec­tion and Infor­ma­ti­on Com­mis­sio­ner (FDPIC) and a repre­sen­ta­ti­ve of the Inter­na­tio­nal Com­mit­tee of the Red Cross, among others, who con­tri­buted their aspects on the topic.

Health data, such as will be con­tai­ned in the elec­tro­nic pati­ent dos­sier (EPD), are per­so­nal data requi­ring spe­cial pro­tec­tion. The Federal Act on the Elec­tro­nic Pati­ent File (EPDG; SR 816.1) the­re­fo­re clear­ly sta­tes that only health­ca­re pro­fes­sio­nals invol­ved in the tre­at­ment of a pati­ent will have access to the EPD. And this only if the pati­ent con­cer­ned has gran­ted them the cor­re­spon­ding access rights.

Health insu­rers, employ­ers or com­pa­nies from the phar­maceu­ti­cal and health­ca­re indu­stries the­re­fo­re have no access to the EPD data. The com­pa­nies com­mis­sio­ned with the data manage­ment necessa­ry for the ope­ra­ti­on of the EPD also have no access to the pati­ents’ data. Howe­ver, pati­ents are free at any time to deci­de whe­ther they want to make their health data avail­ab­le for rese­arch pro­jects – fol­lo­wing appro­pria­te infor­ma­ti­on and consent.

4 As sta­ted in the ans­wer to que­sti­on 3, health insu­rers do not have access to the EPD data. This basic princip­le would not be chan­ged even with the intro­duc­tion of alter­na­ti­ve insuran­ce models in which the EPD is a con­trac­tu­al com­po­nent. As the Federal Coun­cil sta­tes in its state­ment on Moti­on 19.3130 Hess Lorenz “Elec­tro­nic pati­ent dos­sier: pro­mo­ting dis­se­mi­na­ti­on with alter­na­ti­ve insuran­ce models”, it cur­r­ent­ly con­si­ders it pre­ma­tu­re to pro­mo­te the dis­se­mi­na­ti­on of the EPD through alter­na­ti­ve insuran­ce models.