The Light Collective amplifies its call for patient data rights
To mark World Patient Safety Day on September 17, the patient-led Light Collective plans to lead discussions in Washington, DC, to ensure that patient concerns about health data collection are addressed.
WHY IT IS IMPORTANT
Large corporations and social media platforms continue to collect and profit from patient data, the collective says. The advocacy group, which was founded in 2019 “to advance the collective rights, interests and voices of patient communities in health technology,” says it aims to raise public awareness of abuses in the processing of health data.
“That is why it is of paramount importance that the public pays attention to the upcoming World Patient Safety Day, an event that highlights the current challenges facing patient communities from the perspective of patients themselves,” Light Collective said.
The US Privacy Rights Act 2024 — a bill that proposes to create a federal framework for consumer privacy — leaves significant gaps in digital health data, its leaders say. As it stands, 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 like Facebook, they argue.
By drawing attention to World Patient Safety Day – which the World Health Organization has designated to promote collective action to improve patient safety with all its partners – Andrea Downing, co-founder and chair of the Light Collective, will participate in a WPSD summit this week.
Johns Hopkins University is hosting the event at the Bloomberg Center to discuss how different agencies are choosing to protect patient data and the extent to which they are choosing to include patient voices in these efforts — as well as APRA and other legislative efforts.
Patients’ concerns “go beyond the scope of privacy and consent as it relates to personal shopping habits or desired vacation destinations,” Light Collective leaders said. “The risks patients face as their health data is shared or sold to third parties bring new weight to the issues of privacy and consent and require tailored considerations and protections.”
THE BIGGER TREND
For patients, trust and safety go hand in hand with clarity. However, the healthcare industry is notorious for failing to share how the use of technology can impact patient privacy.
A report on user information sharing and hospital website privacy policies published in April by JAMA Network found that most hospital websites transfer data to third parties without providing much explanation about how website visitors’ data is used.
“A significant number of hospital websites did not provide users with sufficient information about the privacy implications of website use, either because they lacked a privacy policy or because the privacy policy contained only limited content about external recipients of user information,” said the researchers, who conducted a statistical analysis of 90 different hospital websites.
Beyond privacy, emerging technologies like artificial intelligence are also changing the dynamics of patient care – in terms of personalization. But patients want clarity around the use of AI in healthcare.
What patients want to know and when challenges the healthcare technology industry to consider both expected and unexpected patient perspectives, leading healthcare forum HIMSS AI in Healthcare Forum said earlier this month in Boston.
According to Dr. Chethan Sarabu, director of clinical innovation at Cornell Tech’s Health Tech Hub and board member of Light Collective, AI can be used to improve patient communication and “build more trust.”
ON THE RECORD
“Whether it’s established companies, emerging third-party AI applications in healthcare, or governments seeking to further regulate the collection of health data, the voice of the patient must be heard if any of these entities are to accurately and effectively address the current and potential future digital dangers posed by today’s digital health landscape,” Light Collective leaders said in a statement.
“These risks are only exacerbated by the rise of artificial intelligence and the flood of AI healthcare applications currently being developed and released,” they add.
Andrea Fox is Editor-in-Chief of Healthcare IT News.
Email address: afox@himss.org
Healthcare IT News is a publication of HIMSS Media.
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