Expanding patient access to data faces cultural, legal, technical challenges
Healthcare providers face several significant barriers to providing patients with access to their health data, according to a study published in the Journal of the American Informatics Association.
Researchers tracked three regional health information exchanges in New York that received grants to improve patient access to healthcare data: Brooklyn Health Information Exchange; Long Island Patient Information Exchange; and Southern Tier HealthLink.
The health data exchanges faced several challenges in expanding patients' access to their health data, including:
- Cultural issues related to language barriers and disagreement among healthcare providers over appropriate data to share with patients;
- Legal issues regarding compliance with HIPAA and other laws, such as federal clinical laboratory improvement amendments; and
- Technical problems, such as insufficient application of data standards.
The researchers noted that the biggest difficulty among all three information exchanges was getting personal health records or patient portals to meet the needs of both patients and providers.
"These findings suggest that technical development alone is unlikely to achieve the goal of providing patients with seamless access to personal data from multiple institutions to better understand and manage their healthcare," the authors wrote. "Continued policy development is likely to be needed."
Editor
Editor Beth earned a bachelor’s degree in journalism and master’s in health communication. She has worked in hospital, academic and publishing settings over the past 20 years. Beth joined TriMed in 2005, as editor of CMIO and Clinical Innovation + Technology. When not covering all things related to health IT, she spends time with her husband and three children.