Hospitals, doctors and the health care system as a whole have become ever more focused on measuring the quality of the care patients receive. And with good reason: as the system leans ever more towards tying reimbursements to quality, everyone recognizes that you can’t improve quality if you’re not measuring it.
Of the many ways one can look at quality in an inpatient setting, patient experience has earned a lot of attention. Hospitals, payors, survey vendors and government agencies are spending millions to develop, deploy and analyze tools like the adult and child Hospital Consumer Assessment of Healthcare Providers and System (HCAHPS) surveys, which give voice to patients and their concerns about the care they receive.
Early Monday morning Boston Children’s Computational Health Informatics Program (CHIP) flipped the switch to release C Tracker, the group’s first ever app to run on Apple’s ResearchKit system for clinical research. The app lets people living with hepatitis C track their health, medication use and quality of life over the course of months or years.
But it’s about more than health tracking; it’s about lowering barriers and making it easier for patients to participate in population-scale outcomes research on hepatitis C medications and how they respond to those medications in the real world. As CHIP director and C Tracker lead Ken Mandl, MD, MPH, said in a statement:
“Traditional clinical trials are plagued by abysmal accrual rates, slowing progress in discovering cures. We foresee a future where ResearchKit apps like C Tracker lower the barrier to participation and speed medical progress.
By and large, the data we have now about hepatitis C treatments come from traditional clinical trials. With C Tracker, we can listen to the patient voice to learn how people live with hepatitis in the real world.”
The teenage years are prime time for experimenting with risky behaviors. One might assume that for teens growing up with a chronic disease like diabetes or cystic fibrosis, that wouldn’t be the case since alcohol can cause very serious problems for these kids.
But if Boston Children’s Hospital’s Elissa Weitzman, ScD, MSc, and Sharon Levy, MD, MPH, are right, that assumption could be completely wrong. According to a recent study the pair published in Pediatrics, chronically ill teens do exhibit risks for alcohol and marijuana use, and at levels similar to those reported for healthy youth. Those behaviors carry all the usual risks related to teen substance use (e.g., accident, injury), as well as unique risks related to their condition and its treatment.
Their study represents one of the first forays into understanding how chronically ill teens navigate the experience of growing up.
“Unprecedented numbers of young people are growing up with a chronic disease,” says Weitzman, who works in the hospital’s Division of Adolescent Medicine. “But by and large, while there are studies of chronic disease and studies of teen risk behaviors, little has been done to understand teen risk behaviors in the context of chronic disease.” …Read More