A couple of weeks ago on July 15, the HHS Office of the Chief Technology Officer and the Center for Open Data Enterprise (CODE) co-hosted a “Roundtable on Balancing Privacy with Health Data Access.” The invitation-only event explored how to balance the privacy of sensitive health information with data access for public good and brought together patients and HHS leaders with over 60 experts in health data from other federal and state government agencies, industry, academia, legal, and patient advocacy organizations. The event emphasized participation and input from patients and patient advocates – the group with the most at stake in ensuring health data privacy.
As a noted leader in providing capabilities and advisory services that enable clients to improve consumer health across the healthcare delivery system, ZeOmega was asked to participate and contribute insights and expertise to the discussion. I was delighted to join Dr. Rahul Singal, ZeOmega’s Chief Medical Officer, in representing ZeOmega at the roundtable.
While the discussion around the balance between data privacy and data access covered multiple areas, five key points emerged as particularly important:
- Current regulatory frameworks, including HIPAA, do not have enough coverage to balance the need for patient-centric data privacy with the need to use individual health data to improve medical care.
- The growth in advanced analytics such as machine learning, artificial intelligence, and cloud computing have provided deeper opportunities to analyze health-related data for the public good, but potentially at a greater risk of infringing on privacy.
- Genomics, clinical EHR data, clinical trials, and surveillance data all produce valuable information with great potential to improve provider accuracy and speed in preventing, diagnosing, and treating disease and illness.
- Social Determinants of Health (SDoH) are considered an influential data source for addressing economic and social conditions that influence health and wellness. However, there is a lack of industry consensus on which factors to include as a SDoH, and some concerns with the potential misuse of this information in a discriminatory manner.
- The Internet of Things (IoT) is producing large amounts of valuable information such as sleep patterns and dietary practices from lifestyle-assistant machines and wearable devices. The use of technology from the IoT will continue to rise, creating a need for privacy protections to ensure this data is not misused or exploited.
As ZeOmega continues to be part of this national discussion, we will contribute to the industry recommendations that will be delivered as an output of this initiative. We remain honored to partner with HHS and CODE to empower data providers and users to maximize the utility of sensitive health data while providing necessary privacy measures and addressing risk.
Dr. Trisha Swift is ZeOmega’s Vice President of Clinical Transformation, leading efforts to develop the organizational strategy for value-based care and ensuring the Jiva platform is utilized to enable practice and operational transformation. Dr. Swift joined ZeOmega from the management consulting industry where she provided advisory services and executive coaching for hospitals, healthcare systems, healthcare architects, and software vendors. She brings expertise in areas such as strategic planning, performance improvement, healthcare quality, regulatory accreditation, and value-based care initiatives. She earned her bachelor’s degree from Mount Mercy University and her Master of Nursing and Doctor of Nursing Practice degrees from the University of Iowa. She is also internationally certified in the science of Patient Safety.