When Google pulled the plug on Google Health, it dampened some of the enthusiasm about the growth of personal health records. But besides making patient portals part of the meaningful use framework, the Office of the National Coordinator for Health IT (ONC) is interested in promoting personal health records (PHRs) that are not tethered to any provider or insurer. Next month a research team in Rome, Ga., plans to kick off an ONC-funded study of patient-centered health information exchange (HIE) involving PHRs.
With a $1.7 million grant from the Office of the National Coordinator (ONC) for Health IT, the two-year project’s goal is to get cancer patients and their caregivers more involved in their care. It is one of 10 HIE “challenge grants” funded by ONC in 2011.
“We felt it was important, in cancer care especially, to have better communication tools,” says Phil Lamson, a senior healthcare consultant at the Georgia Institute of Technology, which is overseeing the study. (The project also involves the Georgia Department of Community Health and the Georgia Cancer Coalition.)“Cancer patients experience a loss of control over what’s happening to them,” he adds. “This gives them a level of control back.”
The project will experiment with several PHR platforms, starting with Microsoft HealthVault, but including less common software from Dossia, Medikeeper and NoMoreClipboard.
The consumer-mediated HIE involves three healthcare providers: Harbin Clinic, a large multi-specialist physician practice; Floyd Medical Center, a nonprofit community hospital; and Redmond Regional Medical Center, a for-profit hospital affiliated with Hospital Corporation of America.
The pilot project involves breast cancer patients because the defined protocols of care cross the spectrum of oncology specialties, Lamson says. There are approximately 1,200 new diagnoses of cancer each year in Rome, 200 of which involve breast cancer. The project team hopes to get 75 percent participation in the study.
“We are hoping to send structured communications, such as symptom assessments, from the patient to the provider on a periodic basis,” Lamson adds. “The clinician could intervene electronically, perhaps with targeted patient education material.”
Georgia in the process of selecting a health information service provider for the statewide HIE. Lamson says the PHR project will use that provider for transmission of data and secure messaging using the Direct protocol.
The Rome cancer patients will have the ability to download data from provider portals and store it in their own PHRs. “People with chronic illnesses often have records in multiple health organizations’ systems,” he says. “They need access to that data in a way that is not tethered to any one institution. They also need to be able to enter information about themselves.”
Another benefit is that the patients can expose the data to their caregivers and other family members. The project will survey clinicians, patients and caregivers about their experience with the PHRs and report back to ONC regularly.