Study: Patients need greater access to their electronic medical data

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 at University of California, San Francisco.

In June 2010, Consumers Union joined fifteen other organizations representing California patients and consumers to develop nine principles for electronic 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. 

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.   

Each organization is considered a health information technology leader for the patient population it serves.  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.  Moreover, of the five health care systems evaluated, only Kaiser and Nautilus had patient portals that enable patients to review some of their health record data.  But neither organization had done much to inform patients -- particularly in their own language -- about patients' personal health information rights, remedies, and responsibilities.  Patients of the five health care organizations examined had little ability to monitor who was accessing their data. 

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. 

The study recommends a number of policies to end the marginalization of patients and consumers in current health information exchange efforts.  For example, launching campaigns to increase health information technology literacy could increase patients' demand for health information exchange, forcing organizations to respond better to their needs.    

In addition, the study calls on state and federal governments to enact new policies that set timetables for organizations to offer patient-friendly web-based portals; create rules that enable consumers to easily understand who has accessed their information and correct data; and fund and publicize timely evaluations of health information exchange systems, including the benefits and risks for patients.