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Balancing Patient Privacy with Data Access: Lessons from the Field

The use of secure, standards-based APIs will create new, exciting opportunities for patients and providers alike to share their data to improve their health. On this International #DataPrivacyDay, join a group of technologists, privacy experts, and patients for a robust discussion on balancing privacy with the expanding flow of health information.

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Grace Cordovano is a rare breed! She is an official Patient Advocate supporting people in navigating the complex and confusing healthcare system after they have received a cancer diagnosis.

This is what information blocking looks like boots on the ground.These are the realities people face when they are living with life-altering, life-limiting, absolutely earth-shattering diagnoses.

When I saw the announcement of Unblock Health by my friends and colleagues, Dr. Grace Cordovano, BCPA, and Shahid Shah, I knew I had to learn more and help them in their efforts to Unblock Health f

Another effort, Unblock Health, was also tarted to increase awareness around access and improve individual understanding (an issue touched upon in a Healthcare de Jure episode with Grace Cordovano from Enlightening Results). The confluence of these events suggests that pressure will continue to be exerted, which will pick up new dimensions when the pending information blocking rule is finalized.

In the wake of the report detailing the Ascension-Google, Project Nightingale, patients are left wondering what the consequences of this, and other similar tech giant partnerships, will be for their near and long-term future. Patients fear being discriminated against, suffering a reputation loss, the risk of losing employment opportunities, and being classified in a manner that makes insurance unaffordable or potentially inaccessible.

There are legitimate concerns about the commercialization of biased AI predictive decision-making algorithms that may negatively impact their care as has been recently reported. Will any of these tech giant partnerships deliver on the promise of compassionate, value-based, cost-effective care?

Many patients are frustrated and angry, feeling repeatedly taken advantage of and powerless in the midst of digital tech transformation.

Privacy, health care administration, and digital tech experts say these partnerships are legal, HIPAA-compliant, and covered by the terms of Business Associate Agreements (BAAs). As patients, weve been assured by our care providers that HIPAA was in place to protect our information. Ironically, while our protected health information (PHI) flows seamlessly within the health data economy, most patients cant get a copy of their own medical records due to rampant data blocking.

How is it that tech giant partnerships are working in cloud-based technology with easy access to patient records and PHI while patients regularly struggle with poor interoperability, forms filled out on clipboards, using fax machines, and receiving paper copies of medical records?

Patient autonomy is revolutionized by access to their data, says Grace Cordovano, board-certified patient advocate and CEO of Enlightening Results.

Grace Cordovanois a board-certified patient advocate. Grace helps us to understand why patient advocates are needed, how they add value, and how much work and expertise is really necessary to do this job effectively.