WASHINGTON DC – From September 15-19, 2024, patients from across the country will be gathering for World Patient Safety Day (WPSD), to discuss the most pressing issues impacting patients’ care and data.
WPSD comes this year at a particularly significant time, with concerns surrounding the various usages of patient health data becoming an increasingly alarming topic. As Congress attempts to pass its drafted American Privacy Rights Act (APRA), which aims to create a broad federal framework for consumer privacy, the patient community is still left with gaps in policy to protect patient safety on the internet.
The Unique Safety Risks For Patients Online:
For the average consumer, the aggregation of their personal data brings up concerns surrounding privacy and consent. However, for the patient, who’s health data is often handled as that of a consumer, the concern goes beyond the scope of privacy and consent related to personal shopping habits or desired vacation destinations.
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. Efforts to handle these concerns, like the proposed American Privacy Rights Act, lack the necessary nuances and special considerations required for health data, especially when it comes to forms of digital health data not covered by HIPAA, for example personal health records (PHR), de-identified data, and health data shared by patient groups on social media platforms like Facebook. All of these risks are only amplified by the emergence of artificial intelligence, and the swarm of healthAI applications that are beginning to be developed and released at this very moment.
Why Patient Safety Day Matters:
World Patient Safety Day shines a light on the significant and growing risks of preventable harm in healthcare as well as the gaps in reporting and oversight. With no tailored legislation presently being proposed to help patients protect their digital health information, and large corporations and social media platforms continuing to aggregate and profit from this sensitive data, it is clear that more patients, as well as the general public, must become aware of the abuses occurring in the handling of health data. 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.
Why This Matters Right Now:
We are now at an inflection point in how all these different entities choose to protect patient data, and to what extent they choose to include patient voices in these efforts. As governments continue to draft bills that will impact the way patient’s data is protected, and emerging technologies shift the way care is received and data is processed, those facing the material costs of these developments must be given the stage. Whether it be established corporations, emerging third party healthAI 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.
Now is the time for the patient perspective to be truly seen rather than tokenized, and understood rather than simply heard. We hope to cultivate a future where current and future patients have the rights and resources to gain autonomy over their own data, supported by a heightened public awareness, government policy, and adjusted corporate practices. There can be no aggregation of our data without representation of the patient voice.
About The Light Collective:
The Light Collective is a patient-led technology collective dedicated to advancing the rights, interests, and voices of patient communities in health technology. They serve a growing coalition of grassroots patient organizations. Through collaboration with patient advocates, healthcare professionals, and industry leaders, The Light Collective aims to drive meaningful change in healthcare through patient-led innovation and inclusion.
Links From The Light Collective & Patients For Patient Safety:
Collective AI Rights For Patient
Patients for Patient Safety US
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