Democratize health data

Data is crucial for the Amsterdam-based startup Clear. The company offers a personalized nutrition plan based on glucose readings from customers themselves. In this way, Clear hopes not only to contribute to a healthier Amsterdam Metropolitan Area, but also to the democratization of health data.

Democratizing health data: one of the important pillars ofClear, a company that offers personalized nutritional advice based on glucose measurements and scientific insights. Customers wear the sensor for two weeks and keep track of exactly what they eat, how they feel, how they sleep and how much they exercise. First they eat what they would normally eat, then they eat what they are advised. The continuous glucose measurement shows how the body reacts to this, so that users can ultimately receive tailor-made nutritional advice.

Privacy by design

Privacy by design, privacy by default are the principles of the app that Clear has developed. Chief Scientific Officer Madelon Bracke: We attach every update, every new process, and all adjustments to this. Here we only collect the data that we need to be able to give good advice. When the program is finished, a user can have their data completely deleted or saved for when they want to run the program again. We therefore always ask whether we may use the personal data anonymously for further research. The database is aggregated and anonymous, so it cannot be traced back to an individual. Almost everyone gives permission for this.”

The principles of the Manifest Tada! fit well with the company, says CEO Piet Hein van Dam. “We want the people to be in control of the data, ie our customers. Because we now open up data that previously belonged to the exclusive domain of health organizations, we democratize data. With this data people can take more control over their own lives.” The company also keeps an eye on the human dimension. For example, the analyses that Clear does on the data are transparent: the company does not use black box algorithms, knows exactly which parameters are used and regularly checks their validity with real cases.

Sharing data

Users can choose to share the data with their GP or another healthcare provider. A portal will be available for this purpose in the Clear app. “This gives you as an individual much more control. Because you have access to your health data yourself, you can also ask much more specific questions, so a doctor can give you better advice afterwards. ” The data is therefore not shared with third parties. Van Dam: “The customer pays us, supplies data and gets something very valuable in return. That is the transaction and no one else is needed for that.” Clear would like health insurers to reimburse the measurement and advice, but no data needs to be shared for that either. Bracke: “If they have questions about clinical effectiveness, we can conduct a joint study of the aggregated data. And the personal data does not have to be shared for this either. Customers can simply submit their invoice if their insurer pays Clear. They can only share their individual data if they want to do it themselves.”

In addition to health insurers, the data that Clear collects is also interesting for other parties. Consider, for example, municipalities and other policymakers. Bracke: “Parties with research questions can contact us and if we find the research question interesting or relevant, we will carry out the research in collaboration. We do not give away the data. We have specific personal and medical data of people with whom we have an agreement. It is therefore our responsibility to handle their data properly and to keep the relationship with customers pure. Agreements about the commonality of data are negotiable for us if we can show that our participants are behind to share their data in an integrated and anonymous way and see that they themselves get value in return.”

Read more about Clear and why they became a member of the Network Council.

Author: Mirjam Streefkerk

6 May 2021

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