From the category archives:

Ethics and policy

WilliamsDavidDSC_0056PreviewlargeDavid A. Williams, MD, is chief of hematology/oncology at Boston Children’s Hospital and associate chairman of pediatric oncology at Dana-Farber Cancer Institute. This column was first published on Huffington Post.

The fact that childhood cancer is, thankfully, rare belies the fact that it is the leading cause of disease-related death in U.S. children age 1 to 19. The number of people with a direct stake in expanding research into pediatric cancer is quite large, well beyond the small number of children with cancer and their families. Not only are the life-long contributions of children cured of cancer enormous, but understanding cancers of young children could also hold the key to understanding a broad range of adult cancers. The time is ripe to allocate more resources, public and private, to research on pediatric cancer.

In an age of increased understanding of the genetic basis of diseases, one thing is striking about many childhood cancers. They are relatively “quiet” cancers, with very few mutations of the DNA. Young children haven’t lived long enough to acquire the large number of mutations that create the background “noise” associated with years of living. This makes it much easier to pinpoint the relevant genetic abnormalities in a young child’s cancer.

Add to this the growing realization that biology, including how various tumors use common “pathways,” is a major factor in how the cancer responds to treatment. Thus, a mechanism that’s relatively easier to observe in the cancers of young children could help scientists understand cancers in adults, in whom the same mechanism is hidden amid the clutter of mutations acquired over a longer life. Full story »

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Patient handoff I-PASSIt’s increasingly clear that good health care is as much about communication as about using the best medical or surgical techniques. That’s especially true during the “handoff”—the transfer of a patient’s care from provider to provider during hospital shift changes. It’s a time when information is more likely to fall through the cracks or get distorted.

Now there’s solid proof that focusing on communications counts. Last week, The New England Journal of Medicine (NEJM) published a paper showing that implementing a set of handoff procedures and training tools led to a 30 percent drop in injuries from medical errors across the nine participating sites. Full story »

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Paul Solman Big Data data analytics health care

To kick off the final panel of the Global Pediatric Innovation Summit + Awards 2014, moderator Paul Solman (above), business and economics correspondent for PBS Newshour, launched straight into the question: What are we in healthcare doing with big data, and what should we be doing with it?

John Brownstein, PhD, director of Boston Children’s Hospital’s Computational Epidemiology Group and co-founder of HealthMap, said big data has had a significant positive effect on his group’s work. By incorporating social media into their data sets, he noted, they have been able to draw conclusions about large-scale infectious diseases in a matter of weeks.

Sachin Jain, MD, MBA, chief medical Information and innovation officer at Merck, took the role of devil’s advocate, making contrarian points about the “big data revolution.” “We’re not doing enough small data,” he said. “Everyone’s talking about predictive analytics, but they’re not doing basic analytics at the point of care.”

“Why can’t big data inform patient care at the point of care?” retorted panelist Joy Keeler Tobin, chief of health informatics at MITRE. Full story »

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Dallas map Ebola electronic health records

(Google Maps)

The Ebola situation in Dallas—with one patient death, two nurse exposures, dozens under quarantine, and talk last week of declaring a state of emergency in the city—has thrown into stark relief the gaps between public health and frontline clinical care. But those gaps also present opportunities to make public health data work harder and to change how doctors approach clinical care in times when events and information are changing at Internet speed.

That’s the gist of an editorial by Boston Children’s Hospital’s Kenneth Mandl, MD, MPH, published Monday in the Journal of the American Medical Association.

It comes down to making electronic health records (EHRs) work more flexibly, in ways that help promote situational awareness among clinicians during times of crisis and flag instances when a patient’s condition may require more attention than usual. Full story »

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Global Pediatric Innovation Summit Awards big dataWhere is the next generation of therapeutic innovations going to come from? Population-level genomic studies? The fitness trackers on everyone’s wrist? Mining electronic medical records? People’s tweets, Yelps and Facebook posts?

How about all of the above?

What all of these things have in common is data. Lots of it. Some of it represents kinds of data that didn’t exist 5 or 10 years ago, but all of it is slowly beginning to fuel the pharma sector’s efforts to create the next blockbuster drug or targeted therapeutic.

At least, it should be. Full story »

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Tamiflu influenza neuraminidase inhibitors conflicts of interest

(stanrandom/Flickr)

This winter, if your doctor suggests that you take Tamiflu, you might want to ask for a conflict of interest statement: a new study suggests that doctors who received payments from the makers of flu-fighting neuraminidase inhibitors—drugs like Tamiflu® and Relenza®—were more likely to view the drugs’ prowess in a favorable light.

In the study, published last week in the Annals of Internal Medicine, a team led by Boston Children’s Hospital’s Florence Bourgeois, MD, MPH, tallied up the financial connections of doctors who participated in 37 reviews of neuraminidase inhibitors.

While it’s been unclear for years whether these drugs really are effective against influenza, it was crystal clear that financial relationships are associated with positive reviews. Full story »

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Smartphone key lock privacy mobile health Kenneth MandlPrivacy policies are a sore point for Internet users. At least once a year the pitchforks and torches come out when a company like Facebook or Twitter changes its policies around how it uses, sells or secures users’ data—things like browsing habits, phone numbers, relationships and email addresses.

You don’t hear as much hue and cry over the privacy of mobile health apps, where people store and track what are literally their most intimate details. But perhaps you should.

Because in fact, a recent survey of mobile health apps led by Boston Children’s Hospital’s Kenneth Mandl, MD, MPH, finds that only about 30 percent of mobile health apps have any kind of policy covering the privacy of users’ data. Full story »

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Ebola response ethics experimental treatment therapy ZMapp

Guinean Red Cross volunteers prepare to decontaminate a hospital in the capital, Conakry. (European Commission DG ECHO/Flickr)

The world paused for a moment when the news broke last week that two Ebola-infected American missionaries working in Liberia had received an experimental therapy called ZMapp. As I write this, both patients are back on U.S. soil, and seem to be responding well to the treatment.

But was it ethical?

That difficult question can be divided into two. First is the question of whether it was ethical to give the two patients a drug that, up to that point, had never been tested in people. The second—in some ways thornier—question is: Was it ethical to give the treatment to two Americans but not the nearly 1,850 West Africans infected in the outbreak (as of August 11)? Full story »

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Clinical excellence is the foundation of patient care. But at a recent TEDx Longwood event, Elaine C. Meyer, PhD, RN, co-founder and director of the Institute for Professionalism and Ethical Practice at Boston Children’s Hospital and an Associate Professor of Psychology at Harvard Medical School, offered insight on the other half of the health care equation: the human connection and the power of conversation.

Meyer’s moving presentation makes clear how communication—listening and sharing words of comfort—profoundly impacts patient experiences, as does its absence. Through heartfelt stories, including her own experience as a patient, her talk empowers physicians, nurses, social workers, psychologists and other medical staff to “be present” and communicate with patients and families compassionately.

“Dig deep, find your inspiration to have conversations,” Meyer says, because patients remember the words spoken to them and how those words made them feel.

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ADHD long term drug safety rare adverse events FDA approval Kenneth Mandl Florence BourgeoisYou’d think drugs meant to be taken by children for years would be studied in children for a long time to measure their long-term safety.

You’d think drugs for a condition affecting millions of children would be tested in many, many children to catch any rare side effects.

You’d think all this would happen before the Food and Drug Administration, an agency known for its strict criteria, approved them for marketing.

But if a new PLoS ONE paper by Boston Children’s Hospital’s Florence Bourgeois, MD, MPH, and Kenneth Mandl, MD, MPH, is any indication, you’d be wrong.

In it, the pair reports that the FDA approved 20 attention deficit hyperactivity disorder (ADHD) drugs over the last 60 years without what would be considered sufficient long-term safety and rare adverse event data.

Their findings, they say, point to larger issues in how the FDA’s approval process addresses the long-term safety of drugs intended for chronic use in children. Full story »

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