Privacy: how to protect data if you don’t know where it is?

Since the start of our #1Patient1Record4Belgium movement, the issue of privacy has come up regularly. This mainly concerns the principle of whether centralized access to all available data is necessary, regardless of where it is located. Doesn’t this endanger patients’ privacy? We are glad that this question is asked, because indeed the opposite is true.

Maximum confidentiality

Let’s start by explaining that in the setup we have in mind, at first only you and your GP have insight into your data. We are confirmed in this by a study by the King Baudouin Foundation, in which 89% of respondents indicate that they want to share medical data with their healthcare providers when it benefits their own health. The same group (88%) indicates that they trust their general practitioner for the recording and management of this data¹.

In addition, the first line of health, such as general practitioners for example, will have access to the essential information in your file: data that he or she needs to do his or her job, for example with regard to severe allergies or use of anticoagulants. Data that can save your life.

After that, the choice is yours. In a well-secured online environment, comparable to that of your bank, only you can decide which data you always want to share and with whom. For example with a healthcare provider, such as a physiotherapist or dietitian. But your primary care provider doesn’t need to know that you’ve sought a second opinion from another doctor, so there’s no need to do so. The default is always maximum privacy.

A fragmented file or a uniform file?

Who has never been frustrated because they always have to repeat their allergies when changing hospitals or other information in their patient file? Or that his GP does not have easy access to his complete patient file because there is no good communication between the front line and the hospitals or for whatever reason?

This reinforces the fragmentation of your patient file. With centralized access offered to all available data, you as a patient can have a unified record and be in control of deciding what data you want to share or not. Because it is important to remember that “The patient is the data”. Just to be clear, all research data would still be there, all doctors’ decisions can be (temporarily) withheld, for example in the case of a second opinion.

Do you also agree that we need better access to our health data? Join the #1Patient1Record4Belgium project, come and testify on this site so that we can share your experiences and work together to improve healthcare in Belgium.

¹ P. Raeymaekers, Zorg voor je data. Informatiebrochure over gezondheidsdata, Brussel: Koning Boudewijnstichting januari 2022.