Bill on Consumer Health Data Privacy Needs Careful Consideration

By Kyle Zebley & Chelsea Lemon | June 2, 2024

Prior to the COVID-19 pandemic, telehealth was not widely available but quickly became a valuable and trusted care modality, delivering quality care for individuals unable to otherwise access care. However, the New York Legislature jeopardizes this type of care with A4983D/S158E (NY Health Information Privacy Act), legislation that hinders technological innovation, reduces access to care, and cuts the cord to telehealth across the state.

Over the course of the past few years, millions of people were able to access safe, effective and convenient care, including live, synchronous virtual visits and asynchronous chat-based interactions, remote monitoring and other digital solutions and emerging technologies, such as artificial intelligence. According to the Journal of American Medical Association,  37% of adults reported using telemedicine in 2021.

Investment in telehealth technology has allowed patients from communities in New York to receive high-quality care. Earlier this year, The University of Rochester Medical Center and Five Star Bank announced an alliance to expand health care access to rural communities through the distribution of telehealth stations, acknowledging not only the need for the service, but the necessity to incorporate telehealth services in accessible places. In New York City, the Department of Social Services and NYC Health + Hospitals announced that since the launch of their telehealth service, they’ve reached over 5,000 unhoused patients seeking care.

Communities throughout New York believe in the power of telehealth. Patients are receiving quality care when and where they need it. Our elected officials should look to these programs, and more importantly the results, to understand why we must foster the expansion of telehealth, rather than create barriers.

We appreciate the desire of the sponsors of the NY Health Information Privacy Act to protect consumer privacy in our increasingly digital world. However, this bill, as currently written, far exceeds HIPAA requirements and introduces stringent and complex consent protocols that could create significant barriers to care. The bill calls for repeated pop-up boxes, click-throughs, electronic signature and an unprecedented 24-hour waiting period simply to agree to things like information about additional health services. This would lead to consent fatigue, particularly among older adults or patients in underserved communities who may not frequently interact online, or conversely, obscure the use of authorization for truly sensitive uses of data. This constant barrage of consent requirements could deter individuals from seeking treatment and turn them away from trusted providers.

Furthermore, the Health Information Privacy Act restricts the ability of customers and patients to learn about products or services that meet their healthcare needs. If a patient is struggling with their mental health and seeking care for the first time, for example, they may be unsure of where to turn and what type of treatments are available. Instead of nurturing access to care by offering this patient additional options, the proposed legislation seeks to squander it. The telehealth industry has worked in other states to find a path that protects consumers’ health data while maintaining the user experience that makes virtual care useful and accessible. The barriers created by this legislation would be truly unique. Other states have successfully balanced consumer health data protection with maintaining the user experience that makes virtual care useful and accessible. New York could look to the Connecticut Data Privacy Act for a more balanced approach.

Technology continues to evolve to help patients, provide more equitable access to care, and improve health outcomes. Broad, overreaching legislation like the New York Health Information Privacy Act, while well-intentioned, would weaken any telehealth advancement that has been achieved throughout the state. Privacy protection is critical. Those operating within the healthcare field understand this. Privacy efforts made by legislators should not undermine the health of you or your family.

New York policymakers must consider the significant impact this legislation could have on telehealth services and work towards a balanced solution that protects privacy without hindering access to care.

Kyle Zebley, Executive Director, ATA Action & Chelsea Lemon, Director of Government Affairs at The Business Council of New York State

*sponsored content*