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The Future of Healthcare: Better Access to health information, Better Care
Advancing mission.

The announcement by President Trump of a National Health Data Tracking System should absolutely be viewed with optimism, assuming sound engineering, balanced privacy and security and hard-coded assurances that patients are indemnified against any liability related to participation. Despite the digitization of health records in the last decade, health data remains highly fragmented and operationally archaic. Patients that move between general and specialty care are given access to numerous portals and still struggle to piece together their information and doctors still occasionally wait by a fax machine to get data for their next patient. While well-intended Trusted Exchange Framework and Common Agreement (TEFCA) has enabled data to flow through organizations that voluntarily participate but many don’t. Further, while intended to happen, direct patient access through TEFCA is nascent.

Instead of adding another layer to the already aging health information technology infrastructure, this network could be built by more modern technology toolsets, such as blockchain, to improve performance, traceability, accountability and security.

With respect to health data security, healthcare has failed. Having published the first general alarm about cybersecurity in the New England Journal of Medicine in 2014, and another since, I feel strongly that the attack footprint of healthcare in unmanageable. The only path forward is newer technologies with far fewer known vulnerabilities.

As for privacy, which is different than security, engineered correctly to interface with CMS, this system, by its existence alone, could minimize one of the greatest harms that occurs from stolen health data, Medicare/Medicaid fraud. Health data remains one of the most valuable data on the dark web markets. If CMS already has a view to an individual’s healthcare, they should be able to intercept any attempts at fraudulent billing using a network participants health information. This could save patients and CMS billions of dollars. The accountability around privacy and security must be explicit or the smart and cautious will not commit.

Lastly, the fundamentals of ethical voluntary research participations should be clearly operationalized, or I would never encourage a family member to join. As the exact algorithmic use cases are not yet known or knowable, participation should be treated like human subjects research where voluntary participants are clearly protected from any possible harms that may result from that participation.