by adgrooms on March 12, 2020

The new HHS interoperability rules are announced, and the timelines for implementation are set. If everything goes as planned, data exchange standards will permit information to flow freely between providers, payers, and patients. The data will be accessible by the patient or their provider at any institution. If they get sick while traveling and require emergency treatment, medical teams can pull their record and check for drug allergies instantly. Patients can access their data from third-party apps, allowing them to have more options for understanding and improving health. The rules are a big win for patients and the democratization of data, but it misses a critical problem; the selling of patient aggregated raw data for profit.

The hope with EHRs was that we would have a trove of collected health information that researchers would have easy access to. We would then, in theory, have more insights from the data to develop new advancements in healthcare. But it comes at a price. The goal of the companies who are involved in patient data is to monetize that data. The data collected was siloed, and those companies who collected and stored the information commoditized it and sold it to anyone who wanted to use it. The practice goes beyond healthcare institutions. Now that Google is in the heath data storage business, they can use the data for advertising purposes in addition to selling to research. This doesn't support the best interests of the nation's healthcare system.

The individual data is personal information, it belongs to the patient, and the laws do attempt to address and protect this right. But the data is held by companies with no restriction as to what they do with de-identified information. As a whole, the data is information about our population and belongs to the people. For companies to profit off of this data, they should be required to contribute value, not merely horde and sell access to the data. Companies wishing to capitalize can add value by selling insights or creating and selling access to tools for analysis.

A national database for patient data should be created, and everyone should be able to access the de-identified data. As with the current system, any provider that needs to treat a patient can pull their data from the database and the patients can access their data through a third-party app. But there are added benefits for researchers at academic institutions. Data access would be free and available for academic purposes. Currently, researchers may have a parent hospital that provides data. But that data set is limited, and some researchers don't have a source in the first place. They may have to purchase additional data. A national pool of all of the data collected would give a clearer picture for studies and allow for greater insights.

In the event of a significant public health crisis, as we are experiencing now, the government agencies would have real-time access to data. There would be a more comprehensive view of critical information needed to coordinate emergency responses. They have experience in keeping patient data and have some of the infrastructure necessary to get the job done.

The new interoperability rules are good for the advancement of healthcare and medicine, but they need to go farther. Making patient data public property can help to achieve a healthy population.