Supporting transparency in healthcare with open data

#1

Session #3 room C.04 @ Opendata.ch/2019
Participants: ca. 8
Facilitated by Ladan Pooyan-Weihs

Adapted from the original protocol in German of “Transparenz schaffen im Gesundheitssektor dank offenen Daten”.


Participants’ experiences on the topic

Here to listen and learn. / Health data are personal and therefore quite sensitive, I come from the field of data protection, from the field of research. / Work in health care, interested in the technical perspective of health care. What we can learn from data for the design of a health care system? / Working for public transport, interested in how companies should deal with health data, can, must… / Journalist with occasional projects in this area, for example recently an analysis of how many trainees work in nursing homes. It is difficult to get the data. / I work in social security. The area is not very transparent. Little is available, but an industry representing 1/5th of the national gross product is supposed to be more present in open data. / Activist involved in Open Health Data topics since 2012.

Are there different aspects to the topic? How are we progressing?

Every organization in the healthcare system has the same problem: not everyone has access to data. In TARMED (the Swiss tariff system for outpatient medical services, introduced in 2004 and used by all doctors), the data flows are recorded, but the diagnoses are often not accessible. Aggregated, the data provide some statistical insight, but we can’t judge whether we can create more or less impact through policy measures, because we have too little data.

The patient does not get an insight into what the doctor prescribes. Without knowing what has been invoiced, there is no transparency in treatments. If the diagnosis is not accessible, the insurance companies and the Confederation itself cannot do their job better. Transparency could potentially reduce the income for the practice, so perhaps this is not the way to attract the professionals?

Legal questions: to what extent could payment transparency be required? I.e., what are the legal frameworks for what the government can force to be disclosed? Individual data collections have been made. The Parliament first said that should not be done, then there was is an initiative to decredibilise the Federal Office of Public Health from a data protection point of view. Under the pushback from the insurances this initiative is stopped.

Patient profiles are required for certain purposes, for example improved insurance certificates. At the moment there is a certain separation between people who look at the data aspects and the communities who are directly involved in political lobbying and concrete initiatives. See for example the Midata.coop project which we know well in the comunity.

Therapy capability is much more critical, but health system management is also geared towards better solutions. It is the law that the analysis data must never be linked to the invoice data. I.e. the insurance company has no diagnostic data. There is a TARMED code on the invoice, and that is very limited. By checking them we may try to see that the same operations are done excessively or even inappropriately.

There are ‘black sheep’ who abuse the system, but under the current set up you could at most name and shame. Perhaps block a patient out of a certain insurance due to abuse. But by the obligation of contractual law, doctors are not allowed to be blocked. Would we have better chances with a uniform health insurance in Switzerland? No: because you still have the cantons, the taxpayers’ money is tied to which ideas. But then the data could already be better evaluated by a link/company.

Digitally it would be possible that all citizens would give their data in a pool. By crowdsourcing we could give up the systematic. But the problem is that the EPD is not mandatory for family doctors. Hospitals may not do it so well. There are differences between cantons. At the moment, depending on the canton, you may require your access as a patient to the system. But whether you see something there depends on where you are treated. Local solutions are an opportunity, e.g. if all physicians of a community would connect, and it spreads interregionally.

What would be the appropriate next steps?

Digitization. As long as the information is not digitally available, there is nothing to compare or evaluate. But I don’t know how far the EPD (electronic patient file) is accepted as a rule by everyone.

In the legal field there are automated indemnity promotions. We could start with such choking points, in order to break up the topic. From the patient’s point of view, I am completely overwhelmed by medical bills. In the hospital you have a lump sum anyway. I’m interested in whether it ran clean, whether I didn’t pay too much. Could I throw that in a pool, see if it’s in the green or red area, compared to other patients? Based on the plausibility of two things that are settled together.

We heard about an overseas project based on a centralized system (this was also described at session #2 to E-ID), the health care system as in the Emirates or Israel we are in the discussions at the economic considerations. Access to the data, what is billed where. Does it need a central data storage? Blockchain? Open access? An OpenSNP like pioneer initiative? There must be an open algorithm developed for all options and consequences. We want to start an alternative health insurance company based on Open Source.

Recognition for digital, open doctors? The young generation doesn’t want to get a fax, they would like to take part in an experiment. In the future that would be a product direction. We would have to think along with Open Data and use it sensibly, e.g. in a mountain region where it is easier to bring all people together. Just start within a region or canton … In the health area, they are the data on the integrate for A.I. Health. Look into the Experimental Article supported by the Federal initiative.


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