PHR: Emerging Electronic Health Information Exchange Systems Don't Meet Patient Needs

From The Sacramento Bee:

Health care  organizations need to do more to help patients realize the full benefits of electronic data from emerging health information exchange systems, according to a new study commissioned by Consumers Union  that appears in the March 2012 Health Affairs.  The study examines 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. 

"Electronic health information exchange holds great promise for improving patient care and outcomes," said Mark Savage, senior attorney for Consumers Union, the nonprofit advocacy arm of Consumer Reports.   "Health care  organizations are making progress developing these systems 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.  Patient and public health must be at the center of these efforts."

The study was funded by the California HealthCare Foundation  and assesses the extent to which these efforts are meeting the needs of patients and communities based on a set of principles developed by California organizations representing consumers and patients.  The independent study was carried out by Robert H. Miller, Ph.D., a health economist and faculty member atUniversity of California,  San Francisco. 

In June 2010, Consumers Union joined fifteen other organizations representing California patients and consumers to develop nine principles for electronic personal health information exchange .  The principles aim to improve patient and population health care  by increasing the availability and use of patient data while protecting patients' privacy.

The consumer principles balance patients' various needs—for example, coordinating health care and information among the patient and diverse providers in multiple organizations; ensuring the security and privacy of personal health information; designing systems that can be easily used by non-English speakers and person with disabilities; and accessing safety and quality data about providers and treatments. 

The 2009 stimulus bill  passed by Congress provided up to $27 billion in incentives for physicians and hospitals to adopt electronic health record systems.  The law also provided an additional $2 billion for activities that encourage meaningful use of electronic health information exchange.  It set a strategic goal of achieving electronic health records  for every person in the United States by 2014.

In theory, electronic health information should enable a patient's providers to share information about the patient's health status and current medications and to remind themselves about services the patient needs.  The patient should be able to review health records  via a web-based patient portal; possibly correct or add information; communicate with providers; view reminders of needed services; and access educational materials tailored to various health issues.  Despite its potential benefits, electronic information sharing  can entail risks for patients, especially loss of privacy and misuse of data.