Since we spoke with the founders of TriVox Health in 2014, their disease management program has taken off. The program began in Boston Children’s Hospital’s Division of Developmental Medicine as a way to more efficiently collect information on children’s ADHD symptoms from parents and teachers. It is now a user-friendly, web-based platform for tracking multiple conditions, incorporating medication confirmation, side effects reporting, disease symptom surveys and quality of life measures.
By the time oral and maxillofacial surgeon Salim Afshar, DMD, MD, was 29 years old, he had acquired medical and dental degrees from Harvard Medical School and Harvard School of Dental Medicine. Ever since, he has dedicated his life to community service and his surgical skills to improving community and global health.
An impassioned humanitarian, Afshar serves as one of the faculty members in the Program in Global Surgery and Social Change at Harvard Medical School. As an entrepreneur and innovator, he’s co-founded a health care software company that enables providers to engage and manage patients and their families around complex episodes of care.
“My whole orientation in life is around being of service — service to my patients, service to my community and service to my family,” Afshar says.
Hover over the icons in the photo above to learn more about Afshar and what keeps him going.
In contrast, hospitals often rely on tools like the Hospital Consumer Assessment of Healthcare Providers and System (HCAHPS) survey, which gives voice to patients and their concerns about the care they receive. But a new study published in the journal BMJ Quality & Safety suggests social media have something to add to that.
“The main problems with measuring patient experience by survey are the small numbers of people who respond to surveys and the lag time,” says Jared Hawkins, MMSc, PhD, of Boston Children’s Hospital’s Computational Health Informatics Program (CHIP). “It can take up to two years before survey data are released to the public. Given that social media data are close to real time, we wanted to see if we could capture this discussion and if the content is useful.”
Hawkins, with Boston Children’s chief innovation officer, John Brownstein, PhD, and their colleagues collected more than 400,000 public tweets directed at the Twitter handles of nearly 2,400 U.S. hospitals between 2012 and 2013. Using machine learning, natural language processing and manual curation, they tagged 34,735 patient experience tweets directed at 1,726 hospital-owned Twitter accounts. …
Want to hack something in medicine? Vendors are increasingly eager to contribute their tools to problem-solving teams, like those who will gather November 14 for Boston Children’s Hospital’s Hacking Pediatrics. Seeing an array of tools presented at a showcase at Boston Children’s last week, I felt excited about the possibilities ahead.
Here are a few tools that can help innovators improve health care for patients, caregivers and providers. …
Walt Whitman’s famous line, “I am large, I contain multitudes,” has gained a new level of biological relevance in neuroscience.
As we grow, our brain cells develop different genomes from one another, according to new research from Harvard Medical School and Boston Children’s Hospital. The study, published last week in Science, provides the most definitive evidence yet that somatic (post-conception) mutations exist in significant numbers in the brains of healthy people—about 1,500 in each of the neurons they sampled.
The finding confirms previous suspicions and lays the foundation for exploring the role of these non-inherited mutations in human development and disease. Already, the researchers have found evidence that the mutations occur more often in the genes a neuron uses most. And they been able to trace brain-cell lineages based on mutation patterns.
“This work is a proof of principle that if we had unlimited resources, we could actually decode the whole pattern of development of the human brain,” says co-senior investigator Christopher Walsh, MD, PhD, the HMS Bullard Professor of Pediatrics and Neurology and chief of the Division of Genetics and Genomics at Boston Children’s. “These mutations are durable memory for where a cell came from and what it has been up to. I believe this method will also tell us a lot about healthy and unhealthy aging as well as what makes our brains different from those of other animals.” …
In early 2014, controversy erupted when two papers in Nature indicated that exposing ordinary cells to stress—an acid bath or mechanical stress—could quickly and efficiently turn them into pluripotent stem cells, capable of developing into virtually all the tissues in the body.
The technique, called “stimulus-triggered acquisition of pluripotency,” or STAP, was lauded for its simplicity compared to other methods like nuclear transfer into egg cells or cellular reprogramming with a set of transcription factors.
Not so fast.
Six months later, the papers were retracted. And this week in Nature, a team led by George Q. Daley, MD, PhD, director of the Stem Cell Transplantation Program at Boston Children’s Hospital, and Peter Park, PhD, head of the Computational Genomics Group at Harvard Medical School (HMS) details what went wrong. In a companion paper, the Daley Lab provides a roadmap for verifying a cell’s pluripotent status.
Prospects are looking up for patients who have no explanation for their symptoms despite extensive investigations and testing. There’s a growing revolution in DNA diagnostics (see yesterday’s example) and ongoing work to bring clarity and meaning to sequencing data. Patients with similar symptoms can find each other like never before, and are increasingly empowered to lead in research and discovery.
Another small but important development was announced yesterday by the National Institutes of Health. The NIH’s Undiagnosed Diseases Network (UDN) has opened up a one-stop online portal called the UDN Gateway where patients and families can apply for access to expert team analysis and testing. (A referral letter from a provider is required.) …
For 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. …
The CLARITY Undiagnosed Challenge is heating up. Biomedical teams from seven countries are racing to interpret DNA sequences from five families affected with undiagnosed illnesses—some with gravely ill children, some already bereaved, all desperate for answers.
In July, the 26 competing teams received whole-genome and whole-exome sequence data from each patient and close family members, along with clinical notes and patient videos. Their reports, due September 21, will be judged by an independent panel based on:
- the methods used to analyze and interpret the sequence data
- the ability to synthesize the information
- clinical usefulness, care recommendations and “next steps.”
Ken Mandl, MD, MPH, director of the Boston Children’s Hospital Computational Health Informatics Program, is used to seeing the world through a different lens. In high school, he began clicking photographs with his camera and developing them in a darkroom in his basement. Now, he frames subjects through the lens of epidemiology and informatics—driving discovery and care transformation through big data, apps and large-scale federated research networks.
Mandl will be one of four panelists discussing The Future of Pediatric Precision Medicine at Boston Children’s Global Pediatric Innovation Summit + Awards 2015. Read more about his life, work and innovations by hovering over the objects that surround him everyday.