Stories about: Computational Health Informatics Program

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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What can patients’ tweets teach us about their health care experiences?

Twitter birds wire patient experience survey
(StartBloggingOnline.com)

Hospitals, doctors and the health care system as a whole have become ever more focused on measuring the quality of the care patients receive. And with good reason: as the system leans ever more towards tying reimbursements to quality, everyone recognizes that you can’t improve quality if you’re not measuring it.

Of the many ways one can look at quality in an inpatient setting, patient experience has earned a lot of attention. Hospitals, payors, survey vendors and government agencies are spending millions to develop, deploy and analyze tools like the adult and child  Hospital Consumer Assessment of Healthcare Providers and System (HCAHPS) surveys, which give voice to patients and their concerns about the care they receive.

Are there other ways to hear what patients are saying? Jared Hawkins, MMSc, PhD, of Boston Children’s Hospital’s Computational Health Informatics Program (CHIP), Boston Children’s chief innovation officer, John Brownstein, PhD, and their colleagues wanted to see whether they could harness the power of social media—specifically, Twitter—to supplement survey-based methods. Their data, published in the journal BMJ Quality & Safety, give encouraging hints, but it’s too early to retire those patient surveys just yet. …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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Think chronically ill teens aren’t drinking or using marijuana? Think again.

teen drinking marijuana chronic illness substance use
(Snap2Art/Shutterstock)

The teenage years are prime time for experimenting with risky behaviors. One might assume that for teens growing up with a chronic disease like diabetes or cystic fibrosis, that wouldn’t be the case since alcohol can cause very serious problems for these kids.

But if Boston Children’s Hospital’s Elissa Weitzman, ScD, MSc, and Sharon Levy, MD, MPH, are right, that assumption could be completely wrong. According to a recent study the pair published in Pediatrics, chronically ill teens do exhibit risks for alcohol and marijuana use, and at levels similar to those reported for healthy youth. Those behaviors carry all the usual risks related to teen substance use (e.g., accident, injury), as well as unique risks related to their condition and its treatment.

Their study represents one of the first forays into understanding how chronically ill teens navigate the experience of growing up.

“Unprecedented numbers of young people are growing up with a chronic disease,” says Weitzman, who works in the hospital’s Division of Adolescent Medicine. “But by and large, while there are studies of chronic disease and studies of teen risk behaviors, little has been done to understand teen risk behaviors in the context of chronic disease.” …Read More

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