Daring the Gap

Today I am conceptually taking you along to a – hopefully! – not too distant future. A future in which the complete medical data, from laboratory values to radiological images to the discharge summary, is available to patients in an electronic file. And in which they have sovereignty of these data.

It is precisely this data sovereignty which is important to me in my conceptual trip. In particular, it involves not only the sovereignty to forward medical information but also to withhold it. Imagine, for example, that you are suffering from an infectious disease which gives rise to associations with a certain lifestyle. Or that you are receiving treatment due to anxiety disorders. Perhaps your attending physician is also the wife of a work colleague.

No matter what concerns you may have, you can keep medical information private. Even if you are very aware that certain findings or values are relevant for further therapy steps. You have this right.

The Right to Data Sovereignty

But won’t the intention of an electronic file be reduced to the point of absurdity if treatment-relevant data are knowingly withheld? Ultimately, it is about optimizing intersectoral treatment by bundling data, avoiding duplicate examinations, and also relieving the financial burden on the healthcare system. The answer is, quite simply: Yes, this is the case. And: This is a good thing. Because the patients’ right to data sovereignty outweighs the physician’s interest in the completeness of information. Thus, we need to dare for this information gap to happen if we are serious about strengthening patients’ rights.

We can of course appeal to patients that rights also come with obligations. For example, the obligations to consciously look after one’s own health and to support the medical establishment to the best of one’s ability. However, we cannot force them. If someone decides to have a potentially worse treatment as a result of refusing data disclosure, state and society will have to accept this.

The question is whether health insurance companies also have to accept this or whether they could, for example, refuse to pay for obvious duplicate examinations. In general, billing without complete information about a treatment appears to be rather difficult. However, these topics must be discussed and defined through treatment contracts.

Transparency for the Patient

To prevent an unwanted lack of communication of information, document solution providers must create sufficient transparency for the patient as to whether a doctor can access information which is necessary for him or her. And they must ensure that the management of data is as simple and user-friendly as possible.