Groups, lawmakers call for reform after personal health-care data publicly exposed throughout the Internet

Washington residents should continue to be wary of where their personal health data is being sent to in a time where smart phones, electronic tablets and other new technology devices run the risk of exposing the data to places and people unknown.

In November, the Wall Street Journal found that Project Nightingale, an initiative conducted by Google’s parent company health-care specialists Alphabet, had placed millions of copies of patient records on Google servers without knowledge of the patients. Data were collected from 21 states and outed lab reports, disease diagnoses, hospitalizations and other general information for the Internet to see.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) was enacted to ensure personal health-care data would remain confidential with doctors and hospitals. Due to new technology with the ability to store data with users' permission, however, the act does not secure all data anymore.

“Protecting health data is important,” Health Innovation Alliance executive director Joel White said to Washington Business Daily. “It’s imperative. But just as important is the ability to maximize sharing of that data to benefit the patient. There are really sick people out there right now, today, who are not able to get best health care possible because our rules for sharing health data have not kept up with modern innovation. Our government now understands the importance of this problem, but the part that is missing is an urgency to fix the issue now.”

On Nov. 20, Piers Nash published a commentary in The Hill informing the public on Project Nightingale, discussing how health privacy both helps and harms individuals and offering possible solutions on how to better manage personal health data. His “ethical framework” for “reach[ing] the full potential of health care data” includes:

• Not transferring any form of data without full audit and perpetual provenance.

• Allowing patients to change their minds about their consent when they wish to.

• Data proceeds being sent to the original data owners.

• Always obtaining data from the original source.

“The technology required to implement this process requires further development, and those who profit from exploitation are powerful,” Nash wrote in his opinion. “However, the advantages of finding a better path forward are well worth the effort.”

U.S. Sen. Patty Murray, D-Washington, has been demanding an updated HIPAA throughout the year, having called on the Trump Administration to reveal policies on protected health information disclosure and speaking on the issue during a Senate Committee on Health, Education, Labor and Pensions hearing last month. Murray’s office was unavailable for comment.

“Health Innovation Alliance is unique in that we bring many perspectives together at the same to time discuss health-care data sharing,” White said. “Our work groups on this issue include patient-based organizations, healthtechs, technology giants, IT giants, NGOs and even Congressional representatives, all in the same room, who share a common goal: improving health care for patients by sharing and protecting sensitive health-care data."

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