WHAT ARE THE GOALS OF THE ASSOCIATION?

The association aims to make an active contribution to realizing a people-centered digitalization of the Swiss healthcare system. We want to define the substantive, technical, organizational, legal, and economic foundations on which the Swiss healthcare data space can be built.

WHAT EXACTLY IS A HEALTHCARE DATA SPACE?

In a healthcare data space, the digital health data of each individual is available for primary and secondary use.

WHAT DOES PRIMARY USE OF HEALTH DATA MEAN?

Primary use of my health data refers to using the data for my medical or healthcare treatment. This can start with mobile health data during sports activities, continue with treatment during a doctor's visit, and eventually extend to obtaining medication from a pharmacy. In the context of primary use, the data is usually not anonymized.

WHAT DOES PRIMARY USE OF HEALTH DATA MEAN?

Primary use of my health data refers to using the data for my medical or healthcare treatment. This can start with mobile health data during sports activities, continue with treatment during a doctor's visit, and eventually extend to obtaining medication from a pharmacy. In the context of primary use, the data is usually not anonymized.

WHAT DOES SECONDARY USE OF HEALTH DATA MEAN?

Secondary use involves using health data outside of primary use. For example, systematic reporting or collection of unexpected side effects of a medication or vaccination for early detection of serious harm is an example of secondary use. In the context of secondary use, the data is usually anonymized

WHAT IS A HEALTHCARE DATA CARPET?

The concept of a data carpet refers to the idea that each person weaves their digital data carpet over time. For example, if I weigh myself every morning and digitally document the value, my healthcare data carpet grows every day with the data point "weight." When everyone's data carpets are woven in a comparable manner, the data collections can be analyzed, creating value from it.

WHAT IS A HEALTHCARE DATA ACCOUNT?

The healthcare data account corresponds to an advanced version of the current Electronic Patient Record (EPR), where all health-relevant personal data is securely stored, visually presented in an understandable way, and organized. Ideally, I should be able to exchange information with healthcare stakeholders using my healthcare data account. For example, the doctor should be able to send my medication prescription to my healthcare data account, and the pharmacy should be able to digitally process the prescription. My laboratory data from the clinic or hospital should also automatically flow into my healthcare data account and find their place in the data carpet.

WHAT IS THE VALUE OF HEALTH DATA?

Medicine has always been, and continues to be, a data-driven empirical science. Every medically recognized form of treatment has demonstrated its effectiveness in an empirical clinical study. However, when health data is digitized in a structured and standardized manner, it becomes quickly analyzable in large quantities. This creates the true value of digitization in healthcare. High-quality, structured, and standardized (comparable) health data have high value for gaining knowledge. They enable personalized treatment for individuals and are important for research and science.

WHAT DOES DATA DONATION MEAN?

When individuals have their health data available in their healthcare data account, they can take active action with their data. For example, they can "publish" their data in an anonymized form to see if there is demand or an offering for their data. If they have hay fever, for instance, they can find allergy platforms that display pollen levels in their surroundings. They could also see if there is a clinical study being conducted in their area to improve the treatment of people with hay fever. By participating in such a study, they can donate their data in a narrower sense for research.

WHY DO WE NEED AN EXPEDITION AND WHAT SHOULD I EXPECT FROM IT?

To formulate concrete requirements, we will try the current solutions for healthcare data spaces together with the "Salutonauts" during our expedition. We will identify their advantages as well as the missing functions and usability that we still need. Based on this, the experts of the association will formulate organizational and regulatory prerequisites. These will be made available to healthcare data space providers to improve their solutions.

WHAT ARE THE ROLES OF THE "SALUTONAUTS"?

The "Salutonauts" are always association members. Additionally, they are participants in the expedition. As association members, they pay an annual membership fee of 150 CHF. As expedition participants, they also pay an expedition membership fee of 350 CHF.
The "Salutonauts" initially sign the "Salutonaut Agreement." Then, they open at least one healthcare data account, including at least one Electronic Patient Record. The health data they collect during the expedition is inputted into the healthcare data account. This includes the results of a clinical examination (health check), billing data, vaccination data, medication lists, laboratory data, and mobile health data. They structurally record their experiences during these expedition stages in an expedition logbook. They can provide criticism and suggestions for improvement in the process.
During the expedition, they should also be consulted and questioned about important developments. They have reached the first expedition goal, the base camp, when they have completed all tasks and recorded their feedback in the logbook.

WHAT ARE THE ROLES OF THE "MEDICONAUTS"?

The "Mediconauts" are practicing doctors who perform clinical examinations (health checks) for the "Salutonauts" as part of the expedition. They have been specially trained for this task and have a suitable digital tool for it.
The "Mediconauts" are available to answer questions about the conducted examination for the "Salutonauts." If the examination shows a need for further investigations, the "Salutonaut" is informed. These further investigations should be carried out by the "Salutonaut's" general practitioner or their existing medical treatment team.