The Patient Perspective: Vulnerability, Data Abuse, & Business as Usual
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?