Stories about: complex care

Caremap: Mobile app lets families track their children’s health, their way

Caremap
Carson Domey fires up Caremap

Family caregivers — as well as older children and adolescents — now have a powerful health data tracker. With a free iPhone app called Caremap, they can securely store and organize vital medical information, share it with health professionals, track health metrics important to them and gain insights to inform care.

For Michelle Domey, that means keeping close tabs on her son Carson’s Crohn’s disease. It means understanding early warning signs and what triggers a flare, like not getting enough sleep. “When he has a flare, the app is something we could take into an appointment,” she says. “We have historical data that can show us what may have triggered it.”

Available for free in the iTunes App Store, Caremap was developed by Boston Children’s Hospital’s Innovation & Digital Health Accelerator (IDHA) in collaboration with Duke Health System. It was built using Apple’s open source CareKit framework.

Read Full Story | Leave a Comment

Cloud-based complex care platform empowers clinicians and families alike

care coordination planningFor children with complex medical needs, care coordination across medical specialties is a major pain point, as is communication across multiple provider systems. And patients aren’t the only ones feeling the burden. Consider these startling statistics:

  • $25-$45 billion is wasted annually in the U.S. due to poor communication in health care.
  • $45 billion has been invested in tools that record and bill for care, but don’t manage care.
  • 40 percent of medical malpractice claims stem from poor communication.

Isaac Kohane, MD, PhD, and Kenneth Mandl, MD, of the Boston Children’s Hospital Computational Health Informatics (CHIP) program, felt care coordination was an area ripe for a technological solution.

Read Full Story | Leave a Comment

15 health care predictions for 2015

healthcare predictions
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

Read Full Story | Leave a Comment

Wise health care spending for children with medical complexity

Spending on children with medical complexityJay Berry, MD, MPH, is a pediatrician and hospitalist in the Complex Care Service at Boston Children’s Hospital.

Growing up, my parents repeatedly reminded me that “money doesn’t grow on trees.” They pleaded with me to spend it wisely. I’ve recently been thinking a lot about my parents and how their advice might apply to health care spending for my patients.

As a general pediatrician with the Complex Care Service at Boston Children’s Hospital, I care for “medically complex” children. These children—numbering an estimated 500,000 in the U.S.— have serious chronic health problems such as severe cerebral palsy and Pompe disease. Many of them rely on medical technology, like feeding and breathing tubes, to help maintain their health.

These children are expensive to take care of. They make frequent health care visits and tend be high utilizers of medications and equipment. Some use the emergency department and the hospital so often that they’ve been dubbed frequent flyers.

Read Full Story | 2 Comments | Leave a Comment

Toward better care models for medically complex children

boy with cerebral palsyThe start of what promises to be a lengthy, multi-part endeavor has begun unfolding on Capitol Hill. It’s an attempt to reform the Medicaid program so that children with medical complexity (those with a single, serious medical condition, or multiple chronic conditions) can receive higher quality care with fewer emergency department visits and fewer hospital admissions.

When you think of medically complex children, think of children living with conditions such as spina bifida or cerebral palsy, children dependent on ventilators or feeding tubes, or children with genetic disorders. They represent just 6 percent of the 43 million children on Medicaid—yet they account for about 40 percent of Medicaid’s spending on children. Their care is often fragmented and poorly coordinated.

The reform effort, led by more than 60 participating pediatric hospitals and supported by the Children’s Hospital Association (CHA), focuses on Medicaid because it’s the single largest insurance provider for children. The backdrop is a cost-conscious Congress that’s the most politically polarized ever, passing the fewest bills ever.

Read Full Story | Leave a Comment

What is meaningful patient engagement?

"Engagement" can take many forms, not all of them authentic. (Jim Bowen/Flickr)
‘Engagement’ can take many forms, not all of them authentic. (Jim Bowen/Flickr)

Richard Antonelli, MD, is a primary care pediatrician and medical director of Integrated Care and Physician Relations and Outreach at Boston Children’s Hospital. He also co-chairs the Task Force on Care Coordination for Children with Behavioral Health Needs, a group within the Massachusetts Child Health Quality Coalition.

Tools and apps designed to engage children and families in their care are proliferating. But are they meaningful? At its best, patient engagement isn’t just technology that brings lab results and medication reminders to a patient’s or parent’s iPhone. It’s about creating a relationship in which families are able to specify their care needs; clinicians and families learn from each other; and patients and families are able to manage their own care.

Patients and families are not just consumers of health care—they define goals and priorities. Their insights are essential.

A powerful tool for supporting a meaningful family/provider relationship is the Care Map. It was developed by Cristin Lind, parent of a child with special needs, who found herself in the role of care coordinator,

Read Full Story | Leave a Comment

Children with medical complexity: Caught in a political and economic crossfire

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.

Read Full Story | 1 Comment | Leave a Comment

When health care access is as complicated as the patients

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.

Read Full Story | Leave a Comment

Pediatric complex care: A day in the life

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.

Read Full Story | 2 Comments | Leave a Comment

A rising tide of neurologic impairment: Where’s the medical home for these children?

Many doctors feel unprepared to care for children with neurologic impairment. (Photo: Lindsey Hoshaw)

Jay Berry, MD, MPH, shown here with patient Kyler Quelch, is a pediatrician and hospitalist in the Complex Care Service at Children’s Hospital Boston. He leads the multi-institutional Complex Care Quality Improvement Research Collaborative.

As a general pediatrician, albeit one with experience in complex care, I find it extremely challenging to take care of children with neurologic impairment. A child’s nervous system can be “broken” for many reasons: a congenital brain or spinal cord malformation, severe head or neck trauma, a genetic condition or, like an increasing number of children, being born prematurely.

Most of the time, we can’t “fix” a broken nervous system. We can only try to support the body functions that are impaired as a result. Functions we take for granted: breathing, eating and digesting, moving, talking. We don’t have a lot of scientific evidence to guide us when doing this,

Read Full Story | 2 Comments | Leave a Comment