Research Identifies Promising Strategies to Enhance Transparency, Build Trust and Standardize Data Collection
Boston, MA and Washington, D.C.—October 31, 2024—OpenNotes, in collaboration with the Office of the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health Information Technology (ASTP), announces the publication of a pivotal study in JAMA Network Open. The study, “Clinician and Patient Perspectives on the Exchange of Sensitive Social Determinants of Health Information,” offers critical insights into how patients and clinicians across the United States view the sharing of social determinants of health (SDOH) data. This research reveals key barriers and facilitators to SDOH data exchange and emphasizes the need for standardization and trust-building in clinician-patient relationships.
Conducted from September 2022 to February 2023, this qualitative study collected data from 235 participants—including clinicians, patients, and care partners—and sheds light on how clinicians and patients feel about documenting and sharing the critical but often sensitive SDOH information, such as financial status or housing stability. However, challenges remain in collecting and documenting these sensitive data.
“Patients and clinicians agree on the importance of SDOH data, but significant concerns remain about how this information is used and documented,” said Catherine M. DesRoches, DrPH, Executive Director of OpenNotes at Beth Israel Deaconess Medical Center, and an Associate Professor at Harvard Medical School. DesRoches is the lead author on the study. “Our research shows that fostering a trusting relationship and providing greater transparency are essential to overcoming these challenges.”
The findings of this study have far-reaching implications for how healthcare systems can adopt a standardized approach to SDOH data collection. Both clinicians and patients called for structured methods, better use of technology, and additional resources to enable meaningful discussions on SDOH during healthcare visits.
“SDOH data are critical not just for individual care but for national health initiatives aimed at reducing health disparities,” said Dr. Vaishali Patel, PhD, a Deputy Director of Technical Strategy & Analysis at ASTP, and a senior author of publication. “This study underscores the need for a multifaceted approach—combining technology, policy, and human resources—to integrate SDOH data effectively into patient care.”
The study’s publication is timely as national conversations around health equity continue to grow. The findings offer a framework for improving the collection and sharing of SDOH data in ways that respect patient privacy while ensuring that healthcare providers can address the non-medical factors that affect health outcomes.
Citation for this study:
DesRoches CM, Wachenheim D, Garcia A, Harcourt K, Henry J, Shah R, Patel V. Clinician and patient perspectives on the exchange of sensitive social determinants of health information. JAMA Netw Open. 2024;7(10). doi:10.1001/jamanetworkopen.2024.44376
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About OpenNotes
OpenNotes is an international movement spreading, studying, and teaching transparent communication among patients, families, and clinicians. When clinical notes are shared with patients, they are called ‘open notes.’ OpenNotes is motivated by evidence indicating that when health professionals offer patients and families ready access to clinical notes, the quality and safety of care improves. OpenNotes is a not-for-profit research lab based at Beth Israel Deaconess Medical Center, a major Harvard Medical School teaching hospital. For more information: opennotes.org
About Beth Israel Deaconess Medical Center
Beth Israel Deaconess Medical Center is a leading academic medical center, where extraordinary care is supported by high-quality education and research. BIDMC is a teaching affiliate of Harvard Medical School and consistently ranks as a national leader among independent hospitals in National Institutes of Health funding. BIDMC is the official hospital of the Boston Red Sox.
Beth Israel Deaconess Medical Center is a part of Beth Israel Lahey Health, a health care system that brings together academic medical centers and teaching hospitals, community and specialty hospitals, more than 4,700 physicians and 39,000 employees in a shared mission to expand access to great care and advance the science and practice of medicine through groundbreaking research and education. For more information: bidmc.org
