Stories about: EMRs

Patient-generated health data: Is health care ready to absorb it?

Health care data tsunamiIsrael Green-Hopkins, MD, is a second-year fellow in Pediatric Emergency Medicine at Boston Children’s Hospital and a fierce advocate for innovation in health information technology, with a passion for design, mobile health, remote monitoring and more. Follow him on Twitter @israel_md.

A few months ago, I spent 15 minutes filling out a detailed health data form at the doctor’s office. The paper form contained multiple questions about my health, family history, medications and basic demographic information. I assumed that an administrative specialist would code it into the practice’s electronic medical record (EMR) to be put to use. So it came as a surprise when I spent another 5 minutes reviewing the form with my physician, who then proceeded to type this information into the EMR herself. I’m confident neither my physician nor I felt enabled by the experience.

Countless people have had a similar experience—or worse, filled out a form with no sign that any clinician ever saw the information. Though the industry has made outstanding progress in adopting EMRs, the practice of data acquisition from patients remains cloudy. Patient-generated health data (PGHD), a term encompassing all forms of data that patients provide on their own, is a relatively new concept in health care. It falls into two broad groups: historical data and biometric data.

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cTAKES: Turning clinical notes into knowledge

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My mother often says that my handwriting is so bad I should have been a doctor. Luckily, digital systems like electronic medical records (EMRs) and computerized pharmacy ordering systems have largely taken the legibility factor out of medicine, especially when it comes to doctors’ and nurses’ notes.

Those notes—attached to millions of patient records—have the potential to do so much more than simply capture clinical observations. Within them lies a treasure trove of data about disease burden, risk factors, drug interactions and more, waiting to be mined for new insights that could dramatically impact research and care.

If the data can be extracted, that is.

The difficulty is that, to a computer, clinical notes are “unstructured” data. There are no standard entries, no numbers to be plugged into a field—just text in a box. And not every doctor or nurse uses the same words to describe the same thing.

So, how can we make the unstructured structured?

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Solving patient engagement: It’s about the data

Doctor and patient reviewing health data collected in an EMR.At the start of today’s National Pediatric Innovation Summit + Awards 2013 panel on patient engagement, healthcare journalist Carey Goldberg offered up a personal anecdote about engagement— or the lack of it—in medical care:

“I was having a minor dermatological procedure, and right before it started, I said to the doctor, ‘This really is a good idea to get this done, right?’ And she said, ‘No, actually, you don’t really need to get it done.’ And I didn’t stop the procedure. And I realized that I embodied the problem of patient engagement. It is a piece of [the health care] puzzle.”

Goldberg’s story framed a discussion that ranged from outcomes measurement to data access, from healthcare incentives to care coordination—all centered on one overriding question: How do we encourage patients to become more engaged in their own medical care?

And given the number of topics that were covered, it’s clear how complex a question that is. It’s one that engages multiple stakeholders—patients and their doctors for starters, but also insurers, policymakers and regulators, health care systems and more.

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