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Report: Patients Need Better Access to Electronic Medical Data

March 6, 2012
by Gabriel Perna
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According to a new study from the University of California, San Francisco, healthcare organizations need to do more to help patients realize the full benefits of electronic data from emerging health information exchange (HIE) systems. The study was commissioned by Consumers Union and appears in the March 2012 Health Affairs. It looks at how well five major California health care organizations are meeting the needs of patients and communities in the use of their electronic data and offers important lessons for the rest of the country.

According to Mark Savage, senior attorney for Consumers Union, the nonprofit advocacy arm of Consumer Reports, healthcare organizations are making progress developing HIEs but they must provide patients with greater access to their electronic medical data and the ability to monitor who is accessing this information to maximize benefits and limit potential privacy risks.  

Funded by the California HealthCare Foundation, the study assesses the extent to which these efforts are meeting the needs of patients and communities based on nine principles developed by California organizations representing consumers and patients. Robert H. Miller, Ph.D., a health economist and faculty member at University of California, San Francisco, conducted the study.

The study examined five different health care organizations that collectively serve a full range of California patient populations: Kaiser Permanente, Nautilus Health Care Management Group, Santa Clara Valley Hospital and Health System, Inland Empire Health Plan, and the Santa Cruz Health Information Exchange.

The study found that the organizations relied on different approaches and were at different stages of developing their systems, which provided varying benefits to both providers and patients.  Overall, exchange of electronic data among a patient's providers in different organizations was limited, which limited benefits to patients from the use of that data for their care. Only Kaiser and Nautilus had patient portals that enable patients to review some of their health record data.  Even those organizations didn’t have much to inform patients -- particularly in their own language -- about patients' personal health information rights, remedies, and responsibilities.

The study found that a lack of clear "rules of the road," including behavioral norms for health information exchange participants, legal agreements, and technical standards, was preventing quicker implementation of health information exchange systems that could benefit providers and patients alike. Little progress has been made when it comes to using electronic health information to improve the health of the public and communities at large.

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