Lawmakers, groups work toward keeping health-care records secure but able to be shared


The latest technology, while helpful in many tasks, has already been proven to be harmful when storing personal health-care data for individuals across the country. As citizens struggle to determine how to better secure health data, North Carolina residents should closely monitor where their information is being stored and where it could be potentially sent off to.

The Wall Street Journal came across Project Nightingale, an initative founded by Google parent company and health care industry Alphabet using Alphabet's systems known as Acension Health, last month. It was reported that Project Nightingale published millions of patient records onto Google servers without notifying any of the patients. Individuals from 21 states were affected, with health data ranging from general information to medical diagnoses released to the general public.

The Hill contributor Piers Nash published "Could health data privacy kill you?" a commentary describing Project Nightingale's actions and providing an ethical framework for how to improve health care for all citizens. Nash's suggestions included taking steps such as not transferring any form of data without consent from all party members, permitting the patient to alter their consent, sending data proceeds to original owners and always obtaining data from original sources.

Health Innovation Alliance executive director Joel White spoke to Washington Business Daily on the need for modernizing health data protection so that all data can be protected at all costs.

“Protecting health data is important,” White said. “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.”

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) was authorized to better protect a person's private health data and ensure it remain private with hospitals and doctors' offices. However, new iPhones, iPads, smart tablets and watches, and other innovative technology, allow the user to give the devices permission to collect personal data, thereby negating HIPAA's effectiveness.

Many U.S. politicians, including North Carolina Sen. Richard Burr (R), have been working for a modernized HIPAA. Burr and other colleagues voted to advance the Lower Health Care Costs Act of 2019 earlier this summer.

Burr's office was unavailable for further 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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