Associate Professor of Pediatrics, University of Colorado School of Medicine
Attending Physician, Children’s Hospital Colorado, Special Care Clinic & Child Health Clinic
Pediatric Director, Children’s Hospital Colorado Epidermolysis Bullosa Program
Dr. James Feinstein is an Associate Professor of Pediatrics at the University of Colorado School of Medicine, a special needs pediatrician at Children’s Hospital Colorado, and the Pediatric Director of the Children’s Hospital Colorado Epidermolysis Bullosa Program. Dr. Feinstein is an NIH-funded health services researcher who has authored more than 30 papers in the field of complex care pediatrics. His current research focuses on outpatient medication management and safety for pediatric patients with special healthcare needs and polypharmacy.
Under the mentorship of Chris Feudtner, MD PhD MPH, and Allison Kempe, MD MPH, Dr. Feinstein has trained as a health services researcher and developed expertise with observational study design, large data analytic methods, secondary data analysis, and statistical programming. Dr. Feinstein has pursued a research career initially focused on palliative care and children with complex chronic conditions (CCCs). In collaboration with Dr. Feudtner, Dr. Feinstein has authored a revision of the widely used classification scheme to identify children with CCCs. They have also collaborated on a study quantifying pediatric exposures to drug-drug interactions in US children’s hospitals. As Dr. Feinstein’s clinical roles have evolved to the outpatient care of children with CCCs and special medical needs, his research interests have also increasingly focused on the outpatient setting. Over the past year, Dr. Feinstein has begun assembling a research portfolio focused on outpatient medication safety and management for pediatric patients, specifically regarding children with CCCs. He authored a study quantifying outpatient adverse drug events associated with national emergency department visits, and has been working with Medicaid data to characterize patterns of medication exposure in infants and children. Dr. Feinstein’s long-term career goals are to improve medication safety and health outcomes for children with polypharmacy, with a focus on implementing and evaluating technology-based strategies to improve signal detection of adverse drug events in children with CCCs.
1. Why is your area of science important?
Children with medical complexity are an exceptionally medically vulnerable group of children, especially those children with substantial neurological impairments. For these children with very limited communication abilities, we are working on ways to improve medication safety and effectiveness by incorporating parent/caregiver-reported outcomes to help assess for beneficial or harmful consequences of therapies.
2. What was important in your Health Services Research training?
Getting knee-deep in it with others who are doing similar things! One of the most important aspects of my training has been consistent (and even now ongoing) participation in “works in progress” (WIPs) sessions. While it’s always daunting to bring fledgling ideas to the table and critically dissect them with peers and mentors, I have found that WIPs provide the safe environment to try ideas out. Some of those ideas don’t end up panning out, but the ones that do – you can be sure they have been vetted thoroughly before taking them to a wider audience.
3. What are the major take home messages your current research provides?
Parents really want to participate and share their specific knowledge about their child. As we continue to shift the healthcare model to outpatient management of pediatric complex chronic conditions, parent-reported outcomes may be one of the best windows into a child’s life outside the hospital or clinic setting. For children who may not be able to communicate, parents are often at their child’s side more than anyone else and the information they can provide is invaluable.
4. What are your goals or areas for future research?
Ultimately, my goal is to improve the information available for providers and enable providers to respond to symptom changes in real time. Just like heart rate trends from our Apple watches or weight loss over time from a wireless scale, what if we had longitudinal symptom data too? These types of data we can’t measure quite as easily yet. But wouldn’t it be useful for a provider to be able to see a downward trajectory in a child’s energy levels or awareness after starting a medication with CNS (central nervous system) effects, long before we see heart rate/blood pressure changes requiring an emergency visit? We will continue to explore how to augment clinical data with patient/parent-reported outcomes and leverage these longitudinal data to help understand the impact of changes in therapies.
5. What advice do you have for researchers who want to work in this area?
Don’t let complexity scare you off! I’ve been told so many times that studying complex medication and symptom profiles in children with medical complexity is just…well….too complex. But that’s the fun of it and it’s what keeps me happy at work every day – I constantly think about how to break the task at hand down into simpler questions, answer them, and then put the pieces back together to tell the story.