Stories about: Ethics and policy

DNA sequencing in newborns: Where do we go from here?

newborn DNA sequencingCan sequencing of newborns’ genomes provide useful medical information beyond what current newborn screening already provides? What results are appropriate to report back to parents? What are the potential risks and harms? How should DNA sequencing information be integrated into patient care?

Four teams from across the country will converge this week (April 8–10) in Kansas City, Mo., to address these questions and share learnings from NIH-funded pilot projects. The four teams, comprising the NIH’s Newborn Sequencing In Genomic medicine and public HealTh (NSIGHT) project, will give updates on their work at the 6th Annual Pediatric Genomics Conference, hosted by Children’s Mercy Kansas City.

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Show me the money: Reimbursement for medical innovations

medical device reimbursementDevice developers tend to focus on the FDA approval process—PMAs and 510(k) clearances—while overlooking another major challenge: getting insurers to cover the device. Before approaching investors, and certainly before doing any studies, keep payers in mind, advises Maren Anderson, president of MDA Consulting, Inc., which specializes in reimbursement planning.

In the old days, doctors prescribed, and insurers paid. Under health care reform, that’s changed, says Anderson.

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What we’ve been reading: Week of March 23, 2015

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Single-Dose Cures for Malaria, Other Diseases (MIT Technology Review)
Pills that deliver a full course of treatment in one swallow could, or “super pills,” could simplify the treatment of diseases such as malaria and potentially produce cost savings that stretch into the $100 billion a year range, according to Bob Langer, PhD, from the Massachusetts Institute of Technology.

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What we’ve been reading: Week of March 16, 2015

 

(government_press_office/Flickr)
(government_press_office/Flickr)

Scientists Call for a Summit on Gene-Edited Babies (MIT Technology Review)

Tools like CRISPR could give us the power to alter humanity’s genetic future. A group of senior American scientists and ethicists have called for a moratorium any attempts to create genetically engineered children using these technologies until there can be a robust debate.

Meet the healthcare company that won Mark Cuban’s heart at SXSW (MedCity News)

CareaLine, founded by the parents of a young girl who died of cancer, won over audience members’ hearts and investors’ wallets during SXSW 2015’s Impact Pediatrics competition.

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Embracing the future of pediatric quality measurement

Pediatric quality of care researchWhile studying quality of care in the 1990s, Mark Schuster, MD, PhD found that few studies on pediatric quality had been conducted. The typical explanation that he was given was that the federal government wasn’t funding research into quality measures because children on Medicaid don’t drive federal health-care costs nearly as much as adults on Medicaid and Medicare do.

But Schuster, chief of General Pediatrics at Boston Children’s Hospital and William Berenberg Professor of Pediatrics at Harvard Medical School, believes there have been other challenges in measuring care quality in children. In an acceptance speech upon receiving the 2014 Douglas K. Richardson Award for Perinatal and Pediatric Healthcare Research, published today in the journal Pediatrics (PDF), Schuster points to factors including the relative rarity of many pediatric conditions and that many of the benefits of excellent pediatric care are not observed until adulthood.

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What we’ve been reading: Week of March 9, 2015

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Protection Without a Vaccine (The New York Times)
Scientists at the Scripps Research Institute have successfully used a type of gene therapy to make monkeys resistant to HIV. Could this be applied to other diseases for diseases for which there is no vaccine?

More about that doctor shortage, er, poor distribution of physicians (The Washington Post)
On Tuesday, the American Association of Medical Colleges released a report predicting a national physician shortage of 90,000 doctors by 2025. But it may be that we have more of a distribution problem than a volume problem; we need more incentives for doctors to practice in medically underserved areas.

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Measles in America: Why vaccination matters

Maimuna (Maia) Majumder is an engineering systems PhD student at MIT and computational epidemiology research fellow at HealthMap.

The 2015 Disneyland measles outbreak in the United States, which started in late December and spread to more than 100 people in just 6 weeks, has recently become the subject of substantial media scrutiny.

Measles is extremely infectious, exhibiting a basic reproductive number between 12 and 18—one of the highest recorded in history. This means that for every 1 case who gets sick in a totally susceptible population, 12 to 18 other folks get sick, too. Thankfully, when uptake of the measles vaccine is high enough in a given community, it’s almost impossible for the disease to spread—thus halting a potential outbreak in its tracks.

But what happens when vaccine rates aren’t high enough?

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HD1829: Advancing telemedicine in Massachusetts

Massachusetts telehealth legislationJudy Wang, MS, is a program manager in the Telehealth Program at Boston Children’s Hospital.

This post is a frank call to action. Massachusetts is one of the few remaining states in the country that does not provide coverage for telemedicine services through its Medicaid program, and credentialing and reimbursement issues have helped limit the expansion of telehealth programs at Boston Children’s Hospital and beyond.

That could change. Legislation supported by Boston Children’s Office of Government Relations, filed on January 16, includes a bill that would advance and expand access to telemedicine services across the Commonwealth.

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15 health care predictions for 2015

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2014 continued to see massive evolution in health care—from digital health innovations to the maturation of technologies in genomics, genome editing and regenerative medicine to the configuration of the health care system itself. We asked leaders from the clinical, research and business corners of Boston Children’s Hospital to weigh in with their forecasts for 2015. Click “Full story” for them all, or jump to:
The consumer movement in health care
Evolving care models
Genomics in medicine
Stem cell therapeutics
Therapeutic development
New technology
Biomedical research

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Rare disease: The path less chosen

Part of a continuing series of videotaped sessions at Boston Children’s Hospital’s recent Global Pediatric Innovation Summit + Awards 2014.

Rare diseases offer a lot of opportunity for gene discovery, but getting a drug to market presents many challenges, and costs per patient are high. This 50-minute session explored this complicated landscape from multiple angles. The panelists:

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