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. Full story »
National data suggest that up to 70 percent of sentinel events—the most serious errors in hospitals—stem at least in part from miscommunications. Communication problems are especially apt to occur during hospital shift changes, when a patient’s care is transferred to incoming doctors and nurses—known in health care as the “handoff.”
More than a year ago, a team led by Amy Starmer, MD, MPH, of the Division of General Pediatrics at Boston Children’s Hospital, developed and began testing a bundle of interventions to ensure that the hospital’s residents were thoroughly and accurately briefed on each patient’s medical history, status and treatment plan in a standardized way.
Through measures such as communications training, a mnemonic to help residents remember key information to pass on and a computerized handoff tool that integrated with the patient’s electronic medical record, they managed to move the needle: Medical errors fell by 40 percent—from 32 percent of admissions at baseline to 19 percent of admissions three months after the program started.
IDEO's Rodrigo Martinez believes we all have the power to improve people's lives by gleaning small insights from everyday interactions
“What is the purpose of healthcare?”To a room full of doctors, nurses and other healthcare experts at Boston Children’s Hospital, it was a startling question—justifying why they save lives was not part of their everyday experience.
“It may seem like a crazy question but it’s important to ask why we do what we do,” said Rodrigo Martinez, life sciences chief strategist from the international design firm IDEO, during a monthly Innovator’s Forum at the hospital. “Is it to care? Is it for us to feel better? Is it for us to have less emotional trauma in our lives?”
One audience member admitted that a lot of his time in the Emergency Department is spent reporting what he does. “During an eight hour shift, I may spend a significant amount of time recording all the things I’ve done to help a patient, but that’s time I’m not with the patient.” Martinez nodded. Full story »
Margaret Coughlin is a Senior Vice President and the Chief Marketing and Communications Officer at Boston Children’s Hospital.
Here at the TEDMED conference, it’s all about horizontal or lateral thinking – coming at problems from new directions, without regard to conventional boundaries. I like the thoughts of Edward DeBono (not a TEDMED speaker), who coined the term “lateral thinking” in 1967:
Some people are unhappy about lateral thinking because they feel it threatens the validity of vertical thinking. This is not so at all. The two processes are complementary, not antagonistic. Lateral thinking enhances the effectiveness of vertical thinking by offering it more to select from. Vertical thinking multiplies the effectiveness of lateral thinking by making good use of the ideas generated.
Lateral thinking is, in a way, an antidote to the way we’re all taught—vertically and specifically. Our education systems seem to be getting more vertical – more concerned with meeting prescribed benchmarks, and, in so doing, discarding the creativity and imagination of learning that is critical to real innovation and real forward movement. As for medical education, radiation oncologist and TEDMED speaker Jacob Scott said it has replaced creativity in the brain with a warehouse. Full story »
In a four-way collaboration, skin cells from patients with autism will be used to make pluripotent stem cells. These will be made into neurons -- for study of what goes awry at the cellular level in autism, and for testing of drugs. (Miserlou/Wikimedia Commons)
In recent years, creative new partnerships have demonstrated big pharma’s recognition that academic medical centers hold many important cards in clinical research: scientific expertise, animal models of disease, patient samples and phenotypic data.
Increasingly, these partnerships involve academic and company researchers developing joint grant proposals in targeted areas, selected (by joint agreement) for company sponsorship. Some, like the Immune Disease Institute’s $25M arrangement with GlaxoSmithKline, are specific to one academic institution; others, like Pfizer’s Centers for Therapeutic Innovation (CTI) program, provide the same resources under the same deal structure to multiple institutions. Each new deal advances the interaction and understanding between academia and pharma around the common goal of finding new compounds and bringing them to clinic.
Now, in an exciting twist on its track record of partnerships with academic institutions, Roche has brought together three Harvard-affiliated organizations to screen and identify new drugs for the treatment of autism spectrum disorders (ASDs). Full story »
Eight percent of Americans name apples as their favorite fruit. About 5 percent of the world population owns a computer and 7 percent are on Facebook. Nine percent own a car. Only 2 percent of adults are natural blondes.
Yet 10 percent of people on this planet have a rare or “orphan” disease. In the U.S., that’s almost 30 million people.
Approximately 7,000 medical conditions have been identified as “rare” – defined by the Orphan Drug Act, passed in 1983, as affecting fewer than 200,000 people in the U.S. Some of these are relatively well known and well studied, such as sickle cell disease or amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease); each affects roughly 30,000 patients in the U.S. Others – like multiminicore myopathy, Diamond Blackfan Anemia or galactosemia – you’re unlikely to have heard of, because they affect only a few hundred or thousand people.
Most of these diseases affect children, often from birth, so at pediatric hospitals, patients suffering from something rare and understudied are actually very common. Full story »
[Ed. note: Tune in to the livestream Monday at 9:30 a.m. ET]
Can the inventors of Watson help save sick children in the developing world? A “cloud-based” pediatric learning module, conceived by Children’s Hospital Boston and built by IBM Interactive, is being beta-tested this year in 20 countries. Provisionally called OpenPediatrics, it will give 1,000 doctors and nurses on five continents the next best thing to hands-on training. (Above is just a preview). Full story »
"Buffalo Bill's Wild West" show poster (cliff1066-TM/Flickr)
The business of smartphone health apps is growing exponentially. Here at Children’s, I coordinate and supervise a team of software developers who are helping our clinicians build apps. While I love the innovation and excitement health apps bring, the regulation is just starting to catch up with the industry. That makes the future uncertain.
The Food and Drug Administration’s proposed mobile health app guidelines, published in July, are a step in the right direction. But many concerns remain. In taming the Wild West, will the FDA go too far into overregulation? Will the new rules stifle the growing industry of app development by small startups or internal hospital developers? Can we continue innovating in the current state?
Consumers feel the uncertainty too. When considering the use of an app, how do you know whether it’s providing correct information? Full story »
Here once again is Vector’s take on some exciting trends we’ve been watching in the pediatric health arena and what we expect to see more of this year. If you’ve got others to propose, scroll to the bottom and let us know!
Genomics is starting to provide clinically actionable information (Michael Knowles/Flickr)
Whole-genome sequencing enters the clinic
In 2000, with our genome deciphered, the Human Genome Project promised to transform medicine, predicting and preventing all that ails us. The project spawned next-generation technologies, accelerated the development of bioinformatics and shaped new perspectives on research. But if, say, a stroke patient was asked the question, “Is your life any better than 10 years ago thanks to advent of genomics?” the answer would have to be “no.” Hence the New York Times’s assertion in 2010 that the project yielded few new cures.
Now that paradigm seems to be shifting. Whole-genome sequencing has begun moving into the clinic, sleuthing out problems, offering hope for a medicine that’s more effective and more personal. 2011 saw genomic information provide biochemical insights timely and actionable enough to improve the treatment of individuals with cancer and dystonia, and, in a case at Children’s, failure to thrive and severe kidney calcification. Full story »
President Obama signs the Patient Protection and Affordable Care Act, March 23, 2010 (Pete Souza/Wikimedia Commons)
National healthcare reform, including President Obama’s Affordable Care Act of 2010, is being driven by widespread dissatisfaction with the high cost and limited accessibility of care. Although we’ve yet to feel the full impact of these national reforms, the reform experience in Massachusetts indicates that mandated universal coverage, by itself, has failed to drive down costs.
So, in Massachusetts, we’re now in the next phase of healthcare reform, focusing on how to control and cut costs while still providing nearly universal access to high quality services and care. The need to bring down costs is stimulating healthcare innovation in three major areas – perhaps offering some lessons for the nation as it moves toward universal care. Full story »
