Engaging clinicians in change will require a cultural shift. (David Oliva/Wikimedia Commons)
Alyssa Bianca Velasco, ScB, is a clinical data specialist for the Standardized Clinical Assessment and Management Plans (SCAMPs) program at Boston Children’s Hospital.
Reducing health care costs doesn’t have to involve making sacrifices in patient safety or quality of care or holding clinicians to rigid guidelines. Over the past several years, Boston Children’s Hospital has rolled out a methodology known as Standardized Clinical Assessment and Management Plans (SCAMPs). Described in the May issue of Health Affairs, SCAMPs are based on the idea that clinicians should be able to diverge from established medical best practices, provided they document the reasons and track the results—in essence making continual data-driven modifications to practice.
The success of SCAMPs in reducing practice variability and costs and improving outcomes at Boston Children’s has led other institutions, one by one, to adopt them. In the next phase, we plan to expand SCAMPs much more broadly, creating a network of hospitals that will pool pertinent clinical data into a centralized non-profit institution, the Institute for Relevant Clinical Data Analytics (IRCDA).
I am part of a team that is providing training, analytics and IT support to help make that large-scale implementation happen. Full story »
What will happen to medically complex children if insurance coverage is reduced and fewer pediatricians are trained to care for them? (Image: Wikimedia Commons)
Jay Berry, MD, MPH, is a pediatrician and hospitalist in the Complex Care Service at Boston Children’s Hospital. His most recent research appears in the JAMA Pediatrics, accompanied by editorials on the findings’ implications for health care and residency training. Berry further discusses its implications in this podcast.
My first encounter with a children’s hospital was as a first grader in 1980, when my 5-year-old cousin was diagnosed with cancer. Although her family was challenged to afford her cancer treatments, St. Jude Children’s Hospital in Memphis welcomed her and treated her cancer into remission. I remember my parents saying, “Everybody in that hospital loves children. No child is turned away.”
In 1997, walking into the Children’s Hospital of Alabama as a medical student, I felt the same sense of hope and courage. Everyone on the staff believed that they could make a difference in the lives of the children and families, despite the horrific illnesses that many of the children endured. I knew, immediately, that I wanted to become a pediatrician and to learn how to care for sick children. Full story »
The Complex Care Service makes morning rounds. (L-R: CCS attending physician Melinda Morin, MD; pediatric resident Grant Rowe, MD, PhD; Tracy Allen, nurse practioner, CCS; Kristin Buxton, nurse practitioner, baclofen pump program.)
This is the second post of a two-part series on children with complex medical needs. (Read the first post.) Details on some patients have been changed for privacy reasons.
Led by attending physican Mindy Morin, MD, MBA, the Complex Care Service team starts down the 9th floor hall at Boston Children’s Hospital, pushing a cart carrying a computer and folders full of paperwork. They’ve just spent about an hour discussing each patient; now it’s time for morning rounds on the floor.
All the patients—some children, some adults—have illnesses affecting multiple systems in their body. Many are dependent on ventilators, feeding tubes and other technology. They are seen by physicians from multiple departments at the hospital. Morin and her colleagues provide the glue.
Some patients are asleep, their families off at work; some are attended by families who sleep in the room with them; others are rarely visited. Some smile and blow raspberries, some have limited or no social interaction. In one room, Morin lingers to talk politics with an adult patient who is still seen at Boston Children’s for his congenital condition. Full story »
Afraa Bakhit, from the Middle East, is among the hospital's most complicated patients. Her disorder is unknown.
This is the first post of a two-part series on children with complex medical needs. Details on some patients have been changed for privacy reasons.
This morning, as every morning, the Complex Care Service (CCS) team huddles in a tiny office deep inside Boston Children’s Hospital. They have 14 patients to discuss, each with a mix of problems that involve multiple clinical departments. Many of them are repeat visitors.
The team begins tackling each case in decreasing order of difficulty. “It seems to be the best way to prioritize the patients with the most immediate needs,” says Mindy Morin, MD, MBA, who’s the attending physician this week. Also on the team are two nurse practitioners, a clinical nurse educator and two resident physicians.
Two-year-old Afraa Bakhit from Dubai tops the list for the sheer number of departments consulting on her case: Genetics, Cardiology, Immunology, Infectious Disease, Rheumatology, Pulmonology, Anesthesia and now a specialist from the Vascular Anomalies Center. Full story »
Diseases like malaria strike children harder than adults, but clinical trials for these diseases rarely include or focus on children. Why? (WHO/P. Virot)
We’re pretty focused on the safety of the things around us. Our drinking water gets checked for chemicals, bacteria and other things that could make us sick. Kids’ car seats are tested to make sure they’ll keep children safe in an accident.
But there’s one surprising arena where this focus on safety and testing often falls short: the medications we give our children. Not just in the United States, but globally.
There are lots of reasons why fewer drugs get tested for safety and efficacy in children than in adults. It’s time-consuming, expensive and, frankly, risky. The ethics of testing new medications in children are pretty thorny.
And, overall, the market for pediatric drugs is much, much smaller than that for drugs for adults, since children fortunately don’t get sick as often as us grown-ups.
But for some diseases like asthma and diarrheal diseases, children bear a greater burden than adults—one that’s not matched by the amount of research done on drugs for kids. Full story »
Cells collected from patients are the backbone of much of biomedical science. When should patients be paid for those cells? (jepoirrier/Flickr)
A few months ago, my mother had a skin cancer removed from her nose. To the best of our knowledge, the tumor tissue was discarded in a biohazard bag, never to be seen again.
Often, though, bits of tumor like that removed from Mom become the raw material that keeps the engine of research running. And every once in a while, a patient’s tissues lead to a real blockbuster, like a cell line or a protein with uniquely valuable biological properties or a lucrative drug that benefits millions of people.
Which brings us (literally) to the $64,000 question: Should the patient who donated those tissues reap some of the rewards? Full story »
This pig helped launch a drug shortage that is getting progressively worse. (Dingar/Wikimedia Commons)
Al Patterson, PharmD, is director of Pharmacy at Boston Children’s Hospital. Read his February 13, 2012 testimony before the Massachusetts Legislature’s Joint Committee on Public Health.
More than 80 percent of the United States supply of heparin, a commonly used blood thinner, originates from pigs reared in farm co-ops in China. Farmers scrape mucus from the intestines and send it to central processing facilities, where heparin is extracted and purified before being sold to U.S. pharmaceutical companies.
But in 2007, blue-ear pig disease, causing a respiratory syndrome, became endemic in Asia—leading to a shortage of pigs and a shortage of heparin. In order to preserve their market share, producers began creating fraudulent substitutes, including one that behaved chemically like heparin, but was actually a manmade compound known as oversulfated chondroitin sulfate (OSCS) derived from pig, sheep or cow cartilage. Full story »
(Kenny Louie/Flickr)
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.
But that wasn’t all. Full story »
Some children with autism are "bloomers" and are able to move to the high-functioning category. They're also more likely to have mothers who are white and educated.
A child with autism is more likely to do well if his mother is white and educated.
This is the message of a study just released in the journal Pediatrics, and it’s something we need to pay attention to—now.
Researchers from Columbia University wanted to find out what happens to children with autism over time. So they looked at the records of more than 6,000 children with autism who were enrolled in California’s Department of Developmental Services (DDS). To get into DDS they had to be referred, and their diagnosis had to be confirmed by someone with expertise in autism.
What they found was that when it came to social and communication skills, for the most part the kids fell into groups ranging from low-functioning to high-functioning. The kids did make progress; the most rapid gains were before age six, and the high-functioning kids tended to make more progress than the low-functioning ones. Even as they made progress, they tended to stay in the group they started in—with one notable exception. That exception was a group the researchers called the “Bloomers.” Full story »
Do the cells in this blood harbor a potentially harmful gene? If the answer is yes, but the person it belongs to donated it for unrelated research, it's not yet clear when - or how - to tell them. (JHeuser/Wikimedia Commons)
Snippets of tissue, vials of blood and tubes of DNA from hundreds of thousands of people sit in freezers and liquid nitrogen tanks right now in laboratories across the globe. They come from people like you and me, donated in the hope that our genes researchers will be able to glean insights for the next breakthroughs for diseases common and rare.
Whenever we sign a consent form and roll up our sleeve, we don’t just join the community of research. We also become part of a debate that has been raging among researchers, clinicians and ethicists for years: What if our DNA sequence turns up bad news unrelated to the research we signed up for?
“There is an emerging consensus among genomics researchers that we have an ethical responsibility to tell participants if we find, in the course of a research study, genetic variations that could impact their healthcare decisions,” says Kenneth Mandl, who directs the Intelligent Health Laboratory (IHL) in the Children’s Hospital Informatics Program (CHIP).
This responsibility can quickly turn into a numbers problem – a massive administrative burden. Consider that there are more than 104,000 human genetic variations now cited in the medical literature with links to human disease. Full story »
