Stories about: patient controlled health records

The data are there. Let patients have them. Here’s why.

patient health data electronic medical record patient-controlled health records
(taedc/Flickr)

Twenty-two years ago, MIT computer scientist Peter Szolovits put forward the idea of creating online repositories where patients could bring all of their health data and manage who can access it. Since then, the health IT industry has made a couple of attempts to create such patient-controlled health records (PCHRs; think Google Health and Microsoft HealthVault).

In reality, patients are no closer now to having direct access to and control over their health data than they were in 1994. But maybe now the time is right. What the health care system has finally achieved, Kenneth Mandl, MD, MPH, and Isaac Kohane, MD, PhD, of Boston Children’s Hospital and Harvard Medical School (HMS), say in The New England Journal of Medicine (NEJM), is the critical mass of supply and demand that should help get PCHRs off the ground:

  • With widespread adoption of electronic medical record (EMR) systems, at least some of any given patient’s data are likely available electronically, albeit locked up within individual institutions.
  • Patients want to be able to manage their health information.
  • Providers, developers and researchers are calling for access to those data.

So what more, Mandl and Kohane ask, needs to be done? …Read More

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