Stories about: Informatics

My work, my life, my innovations: Ken Mandl, MD, MPH

Ken Mandl, MD, MPH, director of the Boston Children’s Hospital Computational Health Informatics Program, is used to seeing the world through a different lens. In high school, he began clicking photographs with his camera and developing them in a darkroom in his basement. Now, he frames subjects through the lens of epidemiology and informatics—driving discovery and care transformation through big data, apps and large-scale federated research networks.

Mandl will be one of four panelists discussing The Future of Pediatric Precision Medicine at Boston Children’s Global Pediatric Innovation Summit + Awards 2015. Read more about his life, work and innovations by hovering over the objects that surround him everyday.

Learn more about the Global Pediatric Innovation Summit + Awards 2015 and register to attend.

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So, what’s your digital phenotype?

Ideally, we’re all supposed to see our doctor once a year for a checkup. It’s an opportunity to see how we’re doing from a health perspective, address any concerns or issues that we may have and catch any emerging issues before they become true problems.

But those visits are really only one-time, infrequent snapshots of health. They don’t give a full view of how we’re doing or feeling.

Now, think for a moment about how often you post something to Facebook or Twitter. Do you post anything about whether you’re feeling ill or down, or haven’t slept well? Ever share how far you ran, the route you biked or your number of steps for the day?

Every time you do, you’re creating a data point—another snapshot—about your health. Put those data points together, and what starts to emerge is a rich view of your health, much richer than one based on the records of your occasional medical visit.

As John Brownstein, PhD—director of the Computational Epidemiology Group (CEG) in Boston Children’s Hospital’s Computational Health Informatics Program and the hospital’s new Chief Innovation Officer—explains in this episode of the Harvard Medical School (HMS) Labcast (click the image above to hear it), this view has a name: your digital phenotype.

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What your dinner cancellation on OpenTable says about the flu

An empty restaurant table. Can measuring restaurant cancellations tell us something about flu outbreaks?You wake up feeling like someone has taken a jackhammer to your head. You’re feverish, aching all over and your stomach is doing somersaults. There’s no doubt about it: You have the flu.

You also have reservations for dinner tonight. So after a mug of tea and an ibuprofen, you grope for your phone and cancel the reservations you’d made through OpenTable.

That cancellation might be a signal to public health officials of a flu outbreak. Because, according to a study by HealthMap’s John Brownstein, PhD, and Elaine Nsoesie, PhD, reservation data from OpenTable could offer another view into the seasonal spread of the flu.

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More than a feeling: Making flu surveillance truly participatory

3D reconstruction of an influenza virus
A flu virus. (CDC)
Disease surveillance has long been the purview of state public health departments, the U.S. Centers for Disease Control and Prevention (CDC) and other agencies that collect reports from doctors, clinics and laboratories.

That disease control model is being turned on its head by projects like Boston Children’s Hospital’s HealthMap, which scours the web for information related to disease outbreaks. HealthMap’s Flu Near You goes a step further by encouraging people to report their own flu-related symptoms and help track flu emergence and spread.

To date, though, efforts like these have been limited to the digital sphere—part of the growing field of digital epidemiology. They don’t rely on blood, spit and mucus to get their data—it’s all in bits and based solely on symptoms.

But even that is changing, thanks to a new Flu Near You initiative called GoViral. GoViral brings everyone directly into the flu surveillance process by allowing them to not just report how they’re feeling, but to test themselves for flu at home and submit their results.

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cTAKES: Turning clinical notes into knowledge

medical_records_shutterstock_116827537

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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Tracking vaccine misconceptions–by mining online data

This 1802 British cartoon skewers the cowpox vacccine, newly introduced against smallpox. Read more at http://en.wikipedia.org/wiki/File:The_cow_pock.jpg#file
This 1802 British cartoon skewers the cowpox vaccine, newly introduced against smallpox. Read more at http://en.wikipedia.org/wiki/File:The_cow_pock.jpg#file

Fifty years after Boston Children’s Hospital faculty developed a vaccine against measles, the United Kingdom is seeing a surge of cases. Last year, it tracked a record 2,000 measles diagnoses—unusual for a country that used to average only a dozen cases every year. With 1,200 cases reported this year so far, that record could be broken.

The cases are the legacy of parents who decided to forgo vaccinating at least 1 million children against measles, based on a 1998 study in The Lancet linking the measles vaccine to autism. That now-retracted study became the origin of its own epidemic, carrying misinformation through a network of parents and media outlets that believed the author had discovered the cause of autism.

Until recently, tracking the spread of vaccine-related rumors was even more difficult than tracking the outbreaks such misinformation engenders. A study in The Lancet Infectious Diseases, involving Boston Children’s Hospital’s HealthMap data collection system and funded by the Bill & Melinda Gates Foundation, has taken a huge step toward turning that around.

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SHRINE: Clinical & population research by the numbers

Clinical research is all about numbers. A new informatics network called SHRINE could help make it easier to get find out if the numbers of patients are there to answer complex questions. (victoriapeckham/Flickr)
Ed. note: This morning at 8:15 EDT, Isaac Kohane, MD, PhD, will tell the audience at TEDMED 2013 about his goal of using every clinical visit to advance medical science. 

To preview his talk, we’ve updated a past Vector story about SHRINE, a system Kohane helped develop to allow scientists to use clinical data from multiple hospitals for research.

Clinical research really comes down to a numbers game. And those numbers can be the bane of the clinical researcher. If there aren’t enough patients in a study, its results could be statistically meaningless. But getting enough patients for a study, particularly for rare diseases, can be a daunting challenge.

The Shared Research Information Network (or SHRINE) could help solve this vexing problem. Developed through Harvard Catalyst by a team led by Isaac “Zak” Kohane, MD, PhD, director of Boston Children’s Hospital’s Informatics Program, SHRINE links the clinical databases of participating Harvard-affiliated hospitals—currently Boston Children’s Hospital, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, Dana-Farber Cancer Institute and Massachusetts General Hospital—letting researchers at those hospitals see how many patients from those hospitals meet selected criteria.

Why is this important?

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Unearthing unrecognized drug interactions, through search data

Google search cropAs we reported on Vector last year, once a new drug is on the market, regulators rely on a mix of surveillance, reporting and data mining to detect adverse drug events (aka side effects).

While those methods can work pretty well, a team of scientists from Microsoft, Stanford and Columbia wanted a better way to find rare or unforeseen interactions between drugs and recently tried a new tactic: looking at what people type into Internet search engines like Google, Microsoft and Yahoo. They hit pay dirt, unearthing evidence that the combination of two drugs—the antidepressant paroxetine and a cholesterol-lowering drug called pravastatin—leads to high blood sugar.

“Given how often patients turn to the Internet for information about the drugs they are taking, it’s not unexpected that we will identify new side effects sooner,” says John Brownstein, PhD, leader of the Computational Epidemiology Group in the Children’s Hospital Informatics Program (CHIP), and whose MedWatcher mobile app takes a crowdsourcing approach to drug side-effect reporting.

The work is another demonstration of the power that search tools, social media and other alternative data sources can bring to public health surveillance. In 2011, Brownstein and colleagues demonstrated that Google searches could reveal a lot about peoples’ health behaviors. “There is tremendous promise in a wide range of tools, from online search to patient forums. We are just now at the start of a new era for drug safety surveillance,” Brownstein notes.

At the same time, the work also emphasizes the need for the public, Internet companies, privacy advocates, health care thought leaders and other stakeholders to agree on ground rules for using data like these for health surveillance. We are, after all, in an era in which everything we do is online.

“As we uncover new uses for these data, there is an important conversation to be had,” says Ben Reis, PhD, leader of CHIP’s Predictive Medicine Group. Reis is working on ways of mathematically predicting possible adverse events. “We have to ensure that the public understands both the potential value of the data for helping society at large, as well as the safeguards that are in place to protect individual privacy.”

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Participatory surveillance in public health: Sharing is caring

Sharing via social media is a great opportunity for collecting better public health data and encouraging healthy behavior changes. (bengrey/Flickr)

We humans are sharing creatures. We talk about ourselves, what we think, what we know. If we weren’t like this, cocktail parties would be really boring, and Facebook and Twitter wouldn’t exist.

Nor would health care. At the most basic level, health care relies on give-and-take between patients and doctors—patients sharing their symptoms and concerns with doctors, and doctors sharing their knowledge with patients.

The same holds true for public health. Prevention and control efforts require lots of patients and doctors to share information so that public health agencies know where to target their resources.

But the give-and-take in public health is often slow and cannot always detect conditions or complications at rates that reflect reality. And usually it’s one-way—from the patient or public to surveyors.

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Empowering patients: Intelligent devices and apps for better health

Melinda Tang, MEng, is a software developer for the Innovation Acceleration Program at  Boston Children’s Hospital.

When children return home from the hospital after surgery, parents can be overwhelmed by the written information and instructions for follow-up. At the MIT Media Lab’s Health and Wellness Hackathon earlier this year, the focus was on empowering patients to take an active role in their health. As my colleague Brian Rosman described, our team from Boston Children’s Hospital attended and spent two weeks developing “Ralph,” a mobile application for managing post-operative care that incorporates an avatar and features of gaming to engage and motivate children to follow their regimen. I was one of the primary programmers for our group.

We won third place, working alongside five other talented teams. Here are some snapshots of what they were up to — helping patients manage asthma, diabetes, pain, cardiac rehab and more.

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