From the category archives:

Information technology

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? Full story »

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(Courtesy Accenture and Harris Interactive)

One of the big selling points of electronic health records (EHRs) is patient empowerment. By letting patients have their data, the thinking goes, they’ll be more engaged in their own health and empowered to take actions that will make them healthier.

Which is good not just for the patient, but for society as a whole, since living healthier means you’ll need to make use of fewer health care resources. Plus, a small study by doctors at a Veterans Affairs hospital showed that patients like having access to their records. Seems like a win-win, right?

While some physicians agree, there are some holdouts. That’s the take-home message from a survey recently published by Accenture and Harris Interactive, in which they asked 3,700 physicians in eight countries their opinions about letting patients have access to their medical and health data.

“The results of the survey are certainly quite interesting, although not surprising,” says Fabienne Bourgeois, MD, MPH, a pediatrician at Boston Children’s and leader of the hospital’s MyChildren’s EHR project. Full story »

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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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How can ICU clinicians manage the data from all these monitors?

With the Internet’s meteoric rise in the last 20 years—to the point of being available 24/7 in your pocket—technology pundits, psychologists and sociologists have been sounding ever louder warnings about information overload: the constant onslaught of communication, information and media coming at us all the time, and in ever greater volume.

Now imagine you’re a doctor or nurse in an intensive care unit (ICU). For you, information overload isn’t just a daily reality—it’s a necessary one. To make the right decisions at the right time for each patient, you must keep tabs on numerous bedside monitors—in the ICUs at Boston Children’s Hospital, that’s 10 or more for each child.

Melvin C. Almodovar, MD, medical director of Boston Children’s Cardiac Intensive Care Unit (CICU), and his colleagues wanted a better way to assess the patient’s physiologic state and catch crises before they happen. Full story »

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Ed. note: Last week we wrote about Jurriaan Peters, MD’s brain network analysis in children with autism. In the second of our two part series on brain mapping, we talk about ways of mapping the brain’s physical wiring.

(AMagill/Flickr)

At the most basic level, the brain is a collection of wires, albeit a really complex one.

But how during development do nerve fibers thread their way through the growing brain and make the right connections?

The answer to that question could reveal more about the nature of conditions like autism spectrum disorders—which, as we reported about a year and a half ago, seem to have their roots in structurally altered brain pathways.

“We know very little about what’s happening in the developing brain in three dimensions,” says Emi Takahashi, PhD, a researcher in the Fetal-Neonatal Neuroimaging & Developmental Science Center (FNNDSC) at Boston Children’s Hospital. “With histology techniques, we can achieve a two-dimensional view over small areas, but it’s hard to know which fiber bundles are growing in which ways during different stages of development in the whole brain.”

But new MRI-based technologies are quickly closing that knowledge gap, giving us our first high-resolution peek into how the developing brain wires itself up.

Using something called high angular resolution diffusion imaging (HARDI) MRI, Takahashi and her colleagues (including neuroradiologist and FNNDSC director P. Ellen Grant, MD) can trace the three-dimensional pathways within the growing brain via stunning images like these:

Courtesy Cerebral Cortex (Takahashi et al., 2012)

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Ed note: The Obama administration is expected to unveil plans for a decade-long Brain Activity Map project next month. This is Part One of a two-part series on brain mapping.

How is information routed in the brains of children with autism? (Image: Jpatokal/Wikimedia Commons)

It’s now pretty well accepted that autism is a disorder of brain connectivity—demonstrated visually with advanced MRI techniques that can track the paths of nerve fibers. Recent exciting work analyzing EEG recordings supports the idea of altered connectivity, while suggesting the possibility of a diagnostic test for autism.

But what’s happening on a functional level? A study published this week zooms out to take a 30,000-foot view, tracking how the brain routes information in children with autism—in much the way airlines and electrical grids are mapped—and assessing the function of the network as a whole.

“What we found may well change the way we look at the brains of autistic children,” says investigator Jurriaan Peters, MD, of the Department of Neurology at Boston Children’s Hospital. Full story »

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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. Full story »

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(Garry Knight/Flickr)

Vector has been deliberating about its predictions for 2013, consulting its many informants. Here’s where we’re putting our money this year; if you have other ideas, scroll to the bottom and let us know.

Genome sequencing scaling up at health care institutions

Last year we predicted genome sequencing’s entry into the clinic; this could be the year it goes viral. Technology companies with ever-faster sequencers and academic medical centers are teaming up at a brisk pace to offer genomic tests to patients. Just in the past two weeks, a deal was announced between The Children’s Hospital of Philadelphia and BGI-Shenzhen to sequence pediatric brain tumors; Partners HealthCare and Illumina Inc. announced a network of genomic testing laboratories; Full story »

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In just a 24-hour period, patients in the hospital typically see a variety of doctors, nurses, x-ray technicians and other medical professionals, and undergo a plethora of diagnostic tests—without an understanding of how all of it comes together to make them well.

The Diversity and Cultural Competency Council (DCCC) at Boston Children’s Hospital recently conducted a three-year study on patient satisfaction. It found that the main reason patients were sometimes dissatisfied was because they felt unfamiliar with the medical information they were receiving, and had difficulty understanding who was part of their care team and how best to communicate with them. And so the idea of MyPassport was born. Full story »

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A new spinoff business will make large-scale genomic diagnostics a reality in medical practice (Image: Rosendahl)

Genomic sequencing and molecular diagnostics are becoming a global business. At the recent American Society of Human Genetics meeting, dazzling technologies for reading genetic code were on display—promising faster, cheaper, sleeker.

Nevertheless, it’s become clear that the ability to determine someone’s DNA or RNA sequence doesn’t automatically translate into useful diagnostics or even actionable information. In fact, the findings are often confusing and hard to interpret, even by physicians.

That’s where academic-industry partnerships can flourish—tapping the deep expertise of medical research centers to bring clinical meaning to sequencing findings. Yesterday, Boston Children’s Hospital and Life Technologies Corp. announced a new venture with a great list of ingredients: fast, accurate, scalable sequencing technology—Life’s Ion Proton® Sequencer—but also research and clinical experience in rare and genetic diseases, bioinformatics expertise to handle the big data, and the medical and counseling expertise to create meaning from the results. Full story »

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