In courses I’ve led before, we looked at the disjointed data privacy regulations in the United States and current events in data privacy (e.g., Facebook, Cambridge Analytica, personal genomics testing, etc). The overall issue is repeatable in any setting: giving a single entity a large amount of data inevitably raises questions of ethics, privacy, security, and motivation.
Where healthcare data brokers are concerned, the stated goals differ by type of data. Where direct patient interaction with the data is concerned, the goal is to give patients “more control over the data” (Klugman, 2018) and perhaps bypass the clunky patient portals set up by providers. Of the data that is not personally identifiable, it can have much less altruistic goals, such as being a player in a multi-billion-dollar market (Patientory, 2018) or contributing to health insurance discrimination (Butler, 2018). I am not naïve enough to think that all exercises in healthcare should be altruistic, and the concept of insurance itself has a certain modicum of discrimination in its core; however, weaponizing the data to aid in unfair practices is beyond the pale here.
From a data engineering perspective, a broker in the truest sense of the word may act as a clearinghouse between providers with disparate systems, enabling the seamless transfer of patient data between those providers without putting the burden of ETL on either of them. Whereas XML formatting and other portability developments have allowed providers using different EHR systems to port patient data, a data brokerage would act as an independent party acting on the patient’s behalf and handling the technical details on integrating their data between all providers and interested parties. Beyond holding the data, the broker would be responsible for ensuring each provider and biller has access to the same single source of truth on that particular patient.
This would, of course, require a data warehouse of sorts for the single source to be held, and puts the questions of security, privacy, transparency, and ethics on the broker. The broker has to make money to survive and a business model must emerge, so it would not be immune to market forces. The aggregation of so much patient data in one place would be too great a temptation to let sit and not make money as de-identified commodities, so a secondary market would emerge and lead to the same issues cited above. Call me pessimistic, but the best predictor of future actions is past behavior, and thus far the companies holding massive amounts of data about our lives either can’t keep it secure from breaches or are perfectly happy selling it while turning a blind eye to what is done with it.
Butler, M. (2018). Data brokers and health insurer partnerships could result in insurance discrimination. Retrieved from https://journal.ahima.org/2018/07/24/data-brokers-and-health-insurer-partnerships-could-result-in-insurance-discrimination/
Klugman, C. (2018). Hospitals selling patient records to data brokers: A violation of patient trust and autonomy. Retrieved from http://www.bioethics.net/2018/12/hospitals-selling-patient-records-to-data-brokers-a-violation-of-patient-trust-and-autonomy/
Patientory. (2018). Data brokers have access to your information, do you? Retrieved from https://medium.com/@patientory/data-brokers-have-access-to-your-health-information-do-you-562b0584e17e