Moti­on Hum­bel (21.3925): Use the elec­tro­nic pati­ent dos­sier as a com­mu­ni­ca­ti­on infras­truc­tu­re and sim­pli­fy access rights

Moti­on Hum­bel (21.3925): Use the elec­tro­nic pati­ent dos­sier as a com­mu­ni­ca­ti­on infras­truc­tu­re and sim­pli­fy access rights

Sub­mit­ted text

The Fede­ral Coun­cil is ins­truc­ted to ensu­re that the EPD is user-fri­end­ly, redu­ces admi­ni­stra­ti­on and pro­vi­des added value for all stake­hol­ders.. In par­ti­cu­lar, adjust­ments to the legal basis are requi­red in the fol­lo­wing areas:

  • The EPD infras­truc­tu­re is inten­ded to be cen­tral basis be used for data sto­rage for pati­ents and data exch­an­ge for heal­th­ca­re pro­fes­sio­nals in the Swiss heal­th­ca­re system,
  • The EPD infras­truc­tu­re may be used for inter­ope­ra­ble addi­tio­nal ser­vices be used. As a prio­ri­ty appli­ca­ti­on, a pro­tec­ted space must be crea­ted for heal­th­ca­re pro­fes­sio­nals in which they can enter and exch­an­ge secu­re data. Pati­ents are only given access to the data after pri­or con­sul­ta­ti­on with a specialist*.
  • The regu­la­ti­on of the Access rights is to be sim­pli­fi­ed on the pati­ent side. As a basic set­ting, all heal­th­ca­re pro­fes­sio­nals will have access to the dos­sier. Pati­ents have the opti­on of exclu­ding ser­vice pro­vi­ders (opt-out). If desi­red, the default set­ting can also be sel­ec­ted, accor­ding to which all heal­th­ca­re pro­fes­sio­nals invol­ved in the tre­at­ment are to be gran­ted access indi­vi­du­al­ly or in groups** (opt-in).

*Exam­p­le of inter­ope­ra­bi­li­ty: Pati­ents should not be told that they have can­cer via a report of the fin­dings that is posted in the EPD. This must be com­mu­ni­ca­ted ver­bal­ly by the heal­th­ca­re pro­fes­sio­nals. The­r­e­fo­re, the data can only be ente­red into the actu­al EPD after the con­sul­ta­ti­on. The ser­vice pro­vi­ders have the need for a pro­tec­ted mail­box that is only acce­s­si­ble to pro­fes­sio­nals. Accor­ding to the cur­rent law (or rather the inter­pre­ta­ti­on of the FOPH lawy­ers), it is not per­mit­ted to use the EPD infras­truc­tu­re for this pro­tec­ted “ser­vice pro­vi­der mailbox”.

** in hos­pi­tals or group prac­ti­ces it may be useful to grant access rights to groups (e.g. pedia­tric onco­lo­gy in Inselspital).

Justi­fi­ca­ti­on

The goal of the EPD is pati­ent safe­ty and qua­li­ty opti­mizati­on in the heal­th­ca­re system. In addi­ti­on, digi­tizati­on should also lead to sim­pli­fi­ca­ti­on of admi­ni­stra­ti­on. Howe­ver, hurd­les in the EPD mean that admi­ni­stra­ti­on beco­mes more com­pli­ca­ted and the EPD infras­truc­tu­re may not be used for data exch­an­ge, which calls into que­sti­on the bene­fits of the EPD and must be corrected.

State­ment of the Fede­ral Coun­cil of 8.9.21

The Fede­ral Coun­cil shares the con­cerns of the peti­tio­ner. In order to increa­se the bene­fits and dis­se­mi­na­ti­on of the elec­tro­nic pati­ent dos­sier (EPD), the fol­lo­wing mea­su­res were taken within the scope of the Report from August 11, 2021 in ful­fill­ment of the Postu­la­te 18.4328 Wehr­li “Elec­tro­nic pati­ent dos­sier. What still needs to be done befo­re it can be used across the board?” exami­ned and imple­men­ted a lar­ge num­ber of mea­su­res that meet this objec­ti­ve. The report can be found on the web­site of the Fede­ral Office of Public Health and on that of Parliament.

On the first point: all heal­th­ca­re pro­fes­sio­nals invol­ved in the tre­at­ment have access to the pati­ent data, pro­vi­ded the pati­ent has gran­ted them the cor­re­spon­ding access rights. In addi­ti­on, pati­ents have the opti­on of ente­ring their own data in the EPD and making it available to the heal­th­ca­re pro­fes­sio­nals trea­ting them.

Heal­th­ca­re pro­fes­sio­nals docu­ment the tre­at­ment of pati­ents in the hos­pi­tal or prac­ti­ce infor­ma­ti­on system (HIS or PIS) of the heal­th­ca­re faci­li­ty. All data that is sub­ject to medi­cal docu­men­ta­ti­on requi­re­ments (medi­cal histo­ry) is stored in an HIS/PIS as a pri­ma­ry system. The EPD, on the other hand, is a secon­da­ry system through which only tre­at­ment-rele­vant data, a sub­set of the data in the HIS/PIS, can be retrie­ved. The EPD can the­r­e­fo­re not replace the HIS/PIS.

So that heal­th­ca­re pro­fes­sio­nals do not have to store data in both the HIS/PIS and the EPD, a so-cal­led deep inte­gra­ti­on of the EPD into the HIS/PIS enables auto­ma­tic trans­fer of data into the EPD.

On the second point: As sta­ted in the report in ful­fill­ment of Postu­la­te 18.4328 Wehr­li, sup­ple­men­ta­ry ser­vices such as eMe­di­ca­ti­on are to be promoted.

The EPD places the needs and the right of pati­ents to infor­ma­tio­nal self-deter­mi­na­ti­on in the fore­ground. This means that the patient’s access to all his or her own data in the EPD is of cen­tral importance. A wea­k­e­ning of this prin­ci­ple can lead to a loss of pati­ent con­fi­dence in the EPD. The tech­ni­cal imple­men­ta­ti­on of this mea­su­re in the EPD would be deman­ding and would lead to addi­tio­nal costs.

It is also the respon­si­bi­li­ty of the heal­th­ca­re pro­fes­sio­nal to deci­de which data is made available in the EPD and when, and can the­r­e­fo­re be view­ed by the pati­ent. Docu­ments con­tai­ning sen­si­ti­ve dia­gno­ses for the pati­ent should the­r­e­fo­re only be made available in the EPD after ver­bal dis­cus­sion with the respon­si­ble heal­th­ca­re professional.

Third­ly, the cur­rent access con­trol system allo­ws pati­ents to deci­de for them­sel­ves who has access to their health data. Pati­ents who are not digi­tal­ly lite­ra­te can be sup­port­ed by aut­ho­ri­zed pro­xies, such as rela­ti­ves. With the opt-out out­lined in the moti­on, all heal­th­ca­re pro­fes­sio­nals would in fact have access to pati­ent data, pro­vi­ded that pati­ents do not exclude cer­tain heal­th­ca­re pro­fes­sio­nals from acce­s­sing the EPD.

From the point of view of data pro­tec­tion and also from the point of view of the patient’s infor­ma­tio­nal self-deter­mi­na­ti­on, this is not desi­ra­ble. The opt-in model addres­sed in the moti­on cor­re­sponds to the cur­rent regu­la­ti­on of access rights, accor­ding to which the pati­ent can grant access rights indi­vi­du­al­ly or in groups. In addi­ti­on, he or she can aut­ho­ri­ze the heal­th­ca­re pro­fes­sio­nals to pass on their access rights to other heal­th­ca­re pro­fes­sio­nals, which means that he or she does not have to aut­ho­ri­ze each heal­th­ca­re pro­fes­sio­nal in a hos­pi­tal depart­ment or a net­work of phy­si­ci­ans individually.

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