Association
WHAT ARE THE GOALS OF THE ASSOCIATION?
The association wants to make an active contribution to making a human-centered digitization of the Swiss healthcare system a reality. We want to define the content, technical, organizational, legal and economic foundations on which the Swiss healthcare data platform can be built.
EXPEDITION
WHAT EXACTLY IS A HEALTH DATA SPACE?
In a health data space, the digital health data of each individual is available for primary and secondary use.
WHAT DOES PRIMARY USE OF HEALTH DATA MEAN?
The primary use of my health data is about the data being used for my medical or health treatment. This can start with the mHealth data during exercise, continue with the treatment during a doctor's visit, and end with the purchase of a medication in the pharmacy. In the context of primary use, the data is generally not anonymized.
WHAT DOES SECONDARY USE OF HEALTH DATA MEAN?
Secondary use uses health data outside of primary use. For example, the systematic reporting or collection of unexpected side effects of a drug or vaccination for the early detection of a serious harm potential is an example of secondary use. In the context of secondary use, the data is usually anonymized.
WHAT IS A HEALTH DATA CARPET?
The image of the data carpet refers to the fact that, over time, every person weaves their digital data carpet. For example, if I stand on the scales every morning and document the value digitally, my health data carpet grows by the data point "weight" every day. If each individual's data tapestry is woven in a comparable way, the data collections can be analyzed and added value created.
WHAT IS A HEALTH DATA ACCOUNT?
The Health Data Account corresponds to a further developed version of today's Electronic Patient Record (EPR) in which all health-relevant personal data is stored securely, visualized and organized in a comprehensible way. Ideally, I should be able to use my health data account to communicate with stakeholders in the healthcare sector: the doctor should send me the prescription in the health data account and the pharmacy should be able to redeem the prescription digitally. My laboratory data from a practice or hospital should also automatically flow into my health data account and find its place in the data tapestry.
WHAT IS THE VALUE OF HEALTH DATA?
Medicine has always been, and still is, a highly data-based, empirical science. Every treatment that is medically recognized today has proven its efficacy in an empirical, clinical trial. However, if health data are digitized in a structured and standardized manner, they can be quickly analyzed in large quantities. This creates the real added value of digitization in the health care sector. Quality, structured and standardized (comparable) health data are therefore of great value for the gain of knowledge. They enable personalized treatment of the individual and are important for research and science.
WHAT DOES DATA DONATION MEAN?
If each individual has his or her health data available in his or her health data account, he or she can become active with that data. For example, he or she can "publish" his or her data anonymously to see if there is a demand or supply for his or her data. For example, if he has hay fever, he could find allergy platforms that indicate the pollen flow in his area. He could also see if a clinical trial is being conducted in his area to improve the treatment of people with hay fever. By participating in such a study, he can donate his data for research in the strict sense.
WHY IS AN EXPEDITION NECESSARY AND WHAT DO I HAVE TO IMAGINE?
In order to formulate specific requirements, we will test the current solutions for GDK together with the Salutonauts on our expedition.
We identify their advantages as well as the functions and operating options that we still lack.
From this, the experts of the association formulate organizational and regulatory requirements. These are made available to the providers of the GDK to improve their solutions.
SALUTONAUTES
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. |