When Regina Holliday needed her husband's electronic health record to help her care for him after a terminal cancer diagnosis it didn't arrive for days, was incorrect, and outdated when he was transferred to another provider. She later used the correct record to care for him until his death.

"It's time to stop being incremental," Holliday, now an advocate for patient access to their EHRs, told a panel of the Health and Human Services' Health IT Policy Committee on April 21. "There's too much urgency to get the data to the patient."

Paul Tang, MD, chairman of the committee's meaningful use workgroup, said that was also the upshot of testimony from providers, vendors and other patient/consumer advocates.

Patient access to their summary and discharge data is vital because nowadays they are "kicked out" of the hospital to continue recuperation at home, he said.

Tang is also chief medical information officer of the Palo Alto Medical Foundation.

The panel explored various ways, such as incentives and technologies, to engage patients and their families in the use of health IT.

Engaging the patient

Other organizations are also looking for ways to boost patient involvement. The Centers for Medicare and Medicaid Services, for example, has included in its proposed meaningful use rule several objectives that encourage patient and family engagement, including giving consumers copies of and timely access to their electronic record.

Many patients also are unaware that they already have the right to access their health information under the Health Insurance Portability and Accountability Act (HIPAA), said Joy Pritts, chief privacy office at the Office of the National Coordinator for Health IT.

Some state laws limit access while others expand it. In her former role as a health law academic, Pritts developed a state-by-state guide on how to access health information.

"There is a certain amount of a lack of knowledge of patients to access their information and their right to it," she said.

To change that situation, ONC plans a  campaign to inform the public about the value of the meaningful use of electronic health records, including patient access to data, Pritts said. Regional health IT extension centers will also be able to help healthcare providers understand the concept of sharing data with their patients as part of their technical assistance to help provider meet meaningful use requirements.

Physicians also need data from patients about their conditions for their electronic health record. Patient-generated data can be just as important as clinical data from tests and exams, said James Weinstein, MD, director of the Dartmouth Institute for Health Policy and Clinical Practices and an orthopedic surgeon.

"The patient reported data can be more important to me than the MRI, CT scan or X-ray," he said.

Physicians often don't ask patients about details of living with their conditions because they see so many patients, he said.

"Just knowing what the patient's health status is, or doing health risk assessments in some organized way, will inform the decision process," he said. "If we know the diagnosis, give the patient the opportunity to engage in shared decision-making or their preferences and values, and measured the effect of treatment, we would know a lot more than we do today about healthcare."