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?
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.