Why an expedition?
Today, many of us are overwhelmed with requesting, storing and understanding our own health data. Just as exploring outer space requires specially motivated and trained astronauts, we are exploring the health data space with a group of specially motivated Salutonauts and Mediconauts. Together, we gain practical experience in requesting and storing our data in existing health data accounts (GDK - Health Data Accounts, Electronic Patient Records (EPDs), and accounts of private providers), interacting with the current healthcare system (practice, pharmacy, and hospital information systems), and providing our data for secondary use in existing data spaces. This is done in order to formulate specific requirements in qualified specifications and profiles. Alongside the Salutonauts, we will thoroughly test the current solutions during our expedition.
IMPORTANT: The data requested remains solely under the control of the Salutonauts. Neither the expedition leadership nor other participants have access to this medical data. We are only interested in the personal experiences of the expedition participants with the Swiss health data space. We identify benefits as well as the functions and capabilities that are still missing for us. Based on this, the expedition leadership formulates functional, organizational, economic, and regulatory conditions on behalf of the association. These conditions will be made available to the GDK providers and the public to improve their solutions or to create the framework for a well-supported solution in the general population.
How does the expedition work?
The expedition consists of two phases, each with a different focus:
In Phase 1 (starting from the end of 2023), we request a defined set (see below) of our health data and open at least two health data accounts (an EPD and at least one account from private providers) to store our collected data. We are also interested in the experience of exchanging data with the healthcare system. The Salutonauts document our collective experiences in collecting, storing, and utilizing data in the shared expedition logbook. The logbook serves as a means of networking and exchanging experiences and suggestions. Based on our experiences, we will develop concrete recommendations for the manufacturers of health data accounts.
Phase 2
In Phase 2, we test existing data spaces for the secondary use of data using our own data. With the help of the logbook, we also collaboratively develop the requirements for robust data spaces in terms of security, governance, and user-friendliness based on our practical experiences.
What health data do we request?
The requested data should be useful to us. The planned data includes:
- Structured data from a health check performed by a Mediconaut according to the standard of internal medicine. This data provides a detailed insight into our health condition.
- Billing data from our health insurance, which shows our interactions with the healthcare system in the past.
- Vaccination data.
- Laboratory data.
- Medication list (derived from the billing data).
- Mobile health data from smartphones and devices. Although these data continuously (24/7) reflect aspects of our health, they are seldom considered in conventional data collections.
This list may change based on the ongoing experiences of the Salutonauts.
BECOME A MEMBER
Support the association GdS and become a member
Help us to transform and reshape the future of health care in Switzerland. And stay up-to-date with the project. If you are interested in becoming a member, click on the checkbox for more information and the link to the application.