Giving patients access to their own health data turns out to be more complicated than it sounds--and technological challenges are just one aspect of it, according to research published at the Journal of the American Informatics Association.
The study follows three regional health information exchanges in New York that were awarded grants to provide patients access to their data across healthcare providers. Due to technical, organizational, cultural, and other factors, all three projects were significantly scaled back, with less data provided to patients.
They involved the Brooklyn Health Information Exchange, which serves the New York City borough of Brooklyn; Southern Tier HealthLink, which covers rural areas and small cities in central New York State; and the Long Island Patient Information Exchange, which covers largely suburban Long Island.
The biggest difficulty across all three projects was achieving functionality that met the needs of both patients and providers. 'I think everyone has a different idea of what a PHR is and what a patient portal is,' one informant said.
Technical challenges were a leading concern in the beginning, but became less so as time went on. The most serious technical barrier was insufficient application of data standards.
Legal issues also gained prominence over time, with the complexity of applying HIPAA and other laws. For example, federal clinical laboratory improvement amendments were cited as the reason why laboratory results had to be delivered to the ordering physician rather than to patients.
Organizational and management strengths were mentioned frequently in the beginning, such as strong relationships with member organizations and close partnerships with vendors, but declined in importance at follow-up.
There were cultural issues as well, with providers disagreeing on what information was appropriate for patients to see and how to best provide information in a way that patients could understand--without it providing too much work for providers. And a more common cultural issue was one HIE's difficulty in providing translations into the dozens of languages spoken by patients in New York City.
"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. Continued policy development is likely to be needed," the authors conclude.
Continuing widespread data-sharing by fax continues to hamper HIE efforts, according a report released this week by HIMSS Analytics.
The Office of the National Coordinator for Health IT named adoption of EHRs and HIEs, as well as standards to support implementation and certification among the elements crucial to achieving interoperability.
To learn more:
- here's the abstract