Web Portals Vital to Patient Control of Health Data: Study

A report in California commissioned by the publisher of Consumer Reports calls for patients to have greater access to their patient information through Web portals.

Although health care organizations are making progress in digitizing medical information, patients need more control over their data, and Web portals are necessary to accomplish this control, according to a new report announced on March 6. The study was commissioned by the Consumers Union, which publishes Consumer Reports.

Robert Miller, adjunct professor of health economics at University of California, San Francisco, performed the study, and the nonprofit philanthropy California HealthCare Foundation funded it. The journal Health Affairs published the report in its March 2012 issue.

For the study, Miller evaluated five California health organizations to see how well they're adhering to principles outlined by the Consumers Union in 2010. The principles were written to encourage increased availability of patient data, with patient privacy protected at the same time.

The organizations are Inland Empire Health Plan, Kaiser Permanente, Nautilus Health Care Management Group, Santa Clara Valley Hospital and Health System, and the Santa Cruz Health Information Exchange. The study found that the organizations exchanged health data only on a limited basis and that patients weren't informed of their rights regarding access to the data and keeping it secure.

The study recommends that health care organizations offer a portal for patients to view their information. Two of the five organizations that the study evaluated, Kaiser and Nautilus, had patient portals, according to the Consumers Union.

The study urges state and federal governments to set a schedule for health care organizations to implement Web-based portals, like those offered by Kaiser and Nautilus.

"For health information exchange with patients, the lack of patient portals in three organizations and truly robust patient portals in two organizations accentuated the lack of patient engagement, control and data monitoring," Miller wrote.

Despite that, the report does calls Kaiser's portal "robust" for allowing patients to view test results, as well as information on allergies, immunizations and past visits. Through its NextGen portal, Nautilus patients could also view test results, request prescription refills and schedule appointments.

In the study, Miller recommended that patients be able to correct or add information, have the ability to communicate with their providers using a Web-based portal and receive reminders of medical services they need. In addition, the study urges health care organizations to create guidelines on how to keep patients informed of which doctors can access their data and make clear the benefits and risks of exchanging patient data.

The California organizations studied were not transparent in showing how providers used data, Miller wrote. They did maintain "audit" trails, but didn't inform patients that they existed. The report also calls for greater patient education on how health information exchanges (HIEs) operate.

The New York Civil Liberties Union has also demanded greater patient control of data within the state. In its March 6 report, the NYCLU recommended that patients be able to "sort and segregate" medical information so they can control which doctors see the data.

Although the Consumers Union is advocating for patient rights to the data in California, the principles have national implications, according to Mark Savage, senior attorney for the Consumers Union. The goal of the principles is to make the benefits of electronic HIEs fully available to patients as well as doctors, Savage told eWEEK.

"There are very few people bringing in the patient perspective and not nearly the effort to build patients into the work [of building HIEs], so that's my primary charge," he said.

In addition to doctors connecting with doctors, health care organizations need to consider how to better connect doctors with patients, said Savage. The question is: what's the best way to do that? "If we start asking that question, we'll probably see a shift in the enterprise," he said.