Harvard docs: Time is right for patient-centered health repositories, not portals

By Jonah Comstock
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A number of public and private initiatives have been launched over the years in the name of a personal health record for patients. But one way or another, they've all failed to gain traction, according to Drs. Isaac Kohane and Kenneth Mandl of the Harvard-affiliated Boston Children's Hospital, who published an editorial in the New England Journal of Medicine last week. The authors believe now might be the time to finally realize that ambition.

"In 1994, when the World Wide Web was only two years old, Massachusetts Institute of Technology computer scientist Peter Szolovits, presaging the consumer health information technology (IT) movement, proposed, in the Guardian Angel Project, using the web for patient management of health and health data," they write. "Yet getting patients electronic copies of their health records has remained an elusive goal. Industry giants have scars to show for their attempts. Why have the barriers been so high? And what is the path to a patient-driven health information economy?"

In part, Kohane and Mandl blame Meaningful Use and patient portals. Whereas PHR tools like Microsoft HealthVault and the now-defunct Google Health actually allowed patients to participate in generating and updating medical data, patient portals have mostly been read-only affairs that only allow patients to access their hospital records, and even then in a limited way. But because Federal MU guidelines required hospitals to have portals, industry energy went in that direction.

Another factor that held back PHRs has been legal concerns around violating HIPAA, a circumstance Kohane and Mandl call ironic, given that the original purpose of HIPAA was to ensure patients had access to their medical data. More generally, fears of security or data breaches, or even of leaking competitive intelligence to other hospitals or other EHR vendors, have all held back real two-way data sharing between patients and their doctors.

"Now, intersecting trends have set the stage for a fresh start," Mandl and Kohane write. "Nearly two thirds of Americans own smartphones, with online access, apps, and both local and cloud storage of data. As health care reimbursement shifts toward risk-based contracting, providers seek to understand the totality of patients’ experience, which requires aggregating data across care silos. ... Fortunately, the belief that it’s dangerous to allow patients access to health data is slowly dissolving, with the advent of programs such as Beth Israel Deaconess Medical Center’s Open Notes, in which doctors and patients jointly read and create chart entries."

The biggest difference between a personal health record and a hospital record is that many people, especially people with one or more chronic diseases, see a number of different care providers. As it stands, it's hit or miss whether those care providers will have access to each other's notes, which makes it hard for anyone to have a complete picture of the patient's health.

"A patient-controlled health record infrastructure can support the development of highly desirable health system qualities," the authors write. "First, it allows a patient to effectively become a health information exchange of one: as data accumulate in a patient-controlled repository, a complete picture of the patient emerges. If patients can obtain their data wherever they go, they can share them with physicians as needed — rather than vice versa. We believe the Meaningful Use program would have been more successful if it had rewarded clinicians for storing data in patient-controlled repositories rather than in EHRs that fragment data across the health care system."

Mandl and Kohane conclude their piece with a call to action, saying that the government, healthcare providers, and the research community all need to work together to facilitate this sea change from hospital-based portals to patient-based personal health repositories.