To mark World Patient Safety Day on September 17, the patient-led Light Collective plans to lead discussions in Washington, D.C., designed to help ensure that patient concerns about health data aggregation are given the stage.

WHY IT MATTERS

Large corporations and social media platforms continue to aggregate patient data and profit from it, the collective says. The advocacy group, which was formed in 2019 "to advance the collective rights, interests and voices of patient communities in health tech," says it wants to make the general public more aware of abuses in health data handling.

"This is why it is imperative that public attention be drawn to the upcoming World Patient Safety Day, an event highlighting the patient communities’ current struggles from the patients themselves," according to the Light Collective.

The 2024 American Privacy Rights Act – a draft bill that proposes to create a federal consumer privacy framework – leaves significant digital health data gaps, its leaders say. In its current state, the bill lacks protections for data not covered by HIPAA, including personal health records, de-identified data and health data shared by patient groups on social media platforms such as Facebook, they argue.

In bringing attention to World Patient Safety Day – which the World Health Organization designates to help advance concerted action to improve patient safety with all of its partners – Andrea Downing, the cofounder and board president of the Light Collective, will be joining a WPSD summit this week. 

Johns Hopkins University is hosting the event at the Bloomberg Center to discuss how different entities choose to protect patient data and to what extent they choose to include patient voices in these efforts – as well as APRA and other legislative efforts.

Patient concerns go "beyond the scope of privacy and consent related to personal shopping habits or desired vacation destinations," leaders from the Light Collective said. "The risks patients face from their health data being shared or sold to third parties brings new weight to the issues of privacy and consent and requires tailored considerations and protections."

THE LARGER TREND

For patients, trust and safety go hand in hand with clarity. However, the healthcare industry has been known to fail in sharing how a technology's use may affect patient privacy. 

A report on User Information Sharing and Hospital Website Privacy Policies published by JAMA Network in April indicated that most community hospital websites transfer data to third parties without explaining much about how website visitor data is used.

"A substantial number of hospital websites did not present users with adequate information about the privacy implications of website use, either because they lacked a privacy policy or had a privacy policy that contained limited content about third-party recipients of user information," according to the researchers that performed a statistical analysis of 90 distinct hospital websites.

Beyond privacy, emerging technologies like artificial intelligence also change the dynamics of patient care – in terms of personalization. But, patients want healthcare's use of AI to be clear. 

What patients want to know and when challenges the healthcare tech industry to consider both expected and unexpected patient points of view, according to healthcare leaders HIMSS AI in Healthcare Forum earlier this month in Boston. 

AI could be used to elevate patient communications and "build more trust," noted Dr. Chethan Sarabu, director of clinical innovation at Health Tech Hub of Cornell Tech and a board member of the Light Collective.

ON THE RECORD

"Whether it be established corporations, emerging third-party health AI applications or the government attempting to further regulate the aggregation of health data, the patient voice must be included if any of these entities wish to accurately and effectively address the current, and potential future digital harms that the current digital health landscape allows," said Light Collective leaders in a statement.

"These risks are only amplified by the emergence of artificial intelligence and the swarm of health AI applications that are beginning to be developed and released at this very moment," they added. 

Andrea Fox is senior editor of Healthcare IT News.
Email: afox@himss.org
Healthcare IT News is a HIMSS Media publication.

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