Stories about: information sharing

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.

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New app streamlines and improves emergency care

It may seem like just a smartphone application, but BEAPPER, a real-time alert and communication platform, has been making waves in the Emergency Department (ED) at Boston Children’s Hospital, which sees an average of 150 patients per day.

The app sends Twitter-like alerts when beds become available, when orders have been placed and when lab results are back, reducing waiting time for families. Physicians working together can view each others’ profiles, and can quickly check on their patients’ status without having to sit down at a computer and log in.

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Let’s liberate clinical trial data

The Gutenberg press disseminated ideas to a wider society. But in the clinical world, much information is still on "lockdown." (Wikimedia Commons)

The best things in life are free: friends, sunny days, beautiful vistas. Wouldn’t it be nice if knowledge were also free? Historically, libraries promulgated knowledge sharing because it was for the public good. We see this spirit increasingly embraced on the Internet – take the recent announcement of a collaboration between Harvard and MIT to make their courses freely available to users around the world via the edX platform.

But have we made all useful knowledge available in a way that allows for the greatest societal advancement? Not really. According to Ken Mandl, MD, MPH, director of the Intelligent Health Laboratory at the Children’s Hospital Informatics Program (CHIP), one important source of information still on lockdown is clinical trial data. In an article called, “Learning from Hackers: Open-Source Clinical Trials” published this month in Science Translational Medicine (not currently available in full text), Mandl and his coauthors call for making raw, de-identified clinical trial data free to the public.

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SHRINE: Clinical and 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)

As we’ve discussed before, clinical research really comes down to a numbers game. But getting enough patients for a study, particularly for rare diseases, can be a daunting challenge. Similarly, it can be hard to tell whether observations made in just two or three patients, say a possible new medication interaction or a new diagnostic presentation, are part of a trend – one that’s worth grant money to study.

The Shared Research Information Network (or SHRINE) could help solve these vexing problems by mining data across hospitals. Developed through Harvard Catalyst by a team led by Isaac “Zak” Kohane, director of the Children’s Hospital Informatics Program, SHRINE links the clinical databases of participating Harvard-affiliated hospitals – currently Children’s, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, Dana-Farber Cancer Institute and Massachusetts General Hospital – letting researchers see the numbers of patients seen at those hospitals who meet selected criteria.

Why is this important?

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