Stories about: Kenneth Mandl

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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C Tracker app brings hepatitis C research to the iPhone, and to patients

Early Monday morning Boston Children’s Computational Health Informatics Program (CHIP) flipped the switch to release C Tracker, the group’s first ever app to run on Apple’s ResearchKit system for clinical research. The app lets people living with hepatitis C track their health, medication use and quality of life over the course of months or years.

But it’s about more than health tracking; it’s about lowering barriers and making it easier for patients to participate in population-scale outcomes research on hepatitis C medications and how they respond to those medications in the real world. As CHIP director and C Tracker lead Ken Mandl, MD, MPH, said in a statement:

“Traditional clinical trials are plagued by abysmal accrual rates, slowing progress in discovering cures. We foresee a future where ResearchKit apps like C Tracker lower the barrier to participation and speed medical progress.

By and large, the data we have now about hepatitis C treatments come from traditional clinical trials. With C Tracker, we can listen to the patient voice to learn how people live with hepatitis in the real world.”

C Tracker is available as a free download on the iTunes App Store. You can learn more about the research the app supports at c-tracker.org.

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