Boston Children’s Hospital Monitors Young Patients with Data from Caregivers; Parents, Teachers and Coaches

2014-10-17 Dorfman, Sherri_headshot Sherri Dorfman, CEO, Stepping Stone Partners focuses on Connected Health, leveraging technology and data for patient engagement, care collaboration and decision support. She blogs at www.consumerehealthengagement.com. Sherri is a member of the HIMSS Value of Provider-Patient Engagement & Patient-Generated Health Data Task Forces.

The following Ask the Expert is developed from the blog by Sherri Dorfman “Boston Children’s Hospital Monitors Young Patients with Data from Caregivers; Parents, Teachers and Coaches,” September 12, 2014, in which she interviewed Dr. Chan and Dr. Fleegler.

In 2011, Dr. Eugenia Chan, MD, MPH, a developmental-behavioral pediatrician and health services researcher in the Division of Developmental Medicine at Boston Children’s Hospital Boston, felt that she needed a better way to monitor her patients and gather insight into how they were doing with their medications and treatment plans.  With a grant from the Croll Family Foundation, Dr. Chan collaborated with Dr. Eric Fleegler, MD, MPH, a pediatric emergency medicine physician and health services researcher in the Division of Emergency Medicine at Boston Children’s Hospital Boston, on the development of a new software tool, eDMC (electronic Developmental Medicine Center).In 2012, Dr. Chan and Dr. Fleegler renamed the Electronic Developmental Medicine Center (eDMC) platform to the Integrated Clinical Information Sharing System (ICISS Health). 

Dr. Chan: We needed a better way to monitor our patients and gather insight into how they were doing with their medications and treatment plans.

Dr. Chan: We wanted to gather and interpret the information from parents and teachers more effectively and gain a more comprehensive view into patient behavior between visits. 

Dr. Chan: The clinician determines when ICISS will email the parents, typically a week or two before the appointment. When the parent receives the email with a link into the software platform, the parent logs in and answers a set of questions about symptoms, school performance, quality of life, global functioning and improvement since the beginning of the treatment. The parent gives the email addresses of the patient’s teachers and other important observers of the child (e.g., sports coaches, behavioral therapists, tutors) to the clinician to get them set up in the system so they can answer similar questions.

Dr. Chan:  The patient data that we gather electronically, paints a picture about how the patient is really doing away from our office.By gathering and comparing observational information from caregivers engaging regularly with the patient, we are able to determine how the patient’s behavior changes throughout the day, week and over time. This helps us make necessary adjustments to the patient’s medications and treatment plan.

With the treatment plan in mind, the clinician views patient-level data to get an overall understanding and then drills down to see specific symptoms and ratings that are incorporated into the behavior score to pinpoint problems.   

During the visit, the clinician shares this information with the patient and family and discusses what has transpired. Since the graph shows different color lines representing observations from each caregiver (i.e., parent, teacher, coach) interacting with the patient at various times of the day, the clinician can identify when and can explore why these problems occur.  This exchange supports clinical decisions and enables the clinician to participate in shared-decision making with the patient and family. 

Another feature of the platform is the ability to notify the clinician when there is a “red flag,” which is a problem that may require action (i.e. severe depression). Even though parents are made aware that this is not a real-time monitoring system, there is someone responsible for ensuring that clinicians have seen the red flag alert. 

Dr. Fleegler: The system transforms how patients are interacting with their clinicians. At the appointment, the clinician can show them the graphs and tables on the computer to understand where they are and have a fruitful conversation.(Graph 1 and Graph 2)

Graph 1: Clincal Interface

2014-10-17 ICISS Clinical Interface pic

Graph 2: Parent Interface

2014-10-17 ICISS Parent Interface pic

Dr. Chan: Since the program started, over 3,000 pediatric patients have participated.  One parent commented on the value that she sees with the system, “It is very easy to use and I like that we save the time at the doctor’s appointment and all of the information is there.”

Dr. Chan: We wantto be more generalized for expansion into other pediatric patient populations.We have extended the ICISS Health platform to additional clinics at Boston Children’s that treat patients with ADHD, as well as private practices affiliated with Boston Children’s, and we are expanding into new conditions such as autism, asthma, depression and epilepsy.

Dr. Chan: For each new condition, we have convened a cross-disciplinary team to define the data that need to be collected to support decisions. For example, we are working closely with clinicians from the Boston Children’s Autism Center to devise a questionnaire for patients, since there is no standardized set of questions for this patient population. For asthma, we would like to invite the school nurse to participate and provide insight into frequency of nurse office visits and rescue medication use by the patient, and whether they used the patient’s asthma action plan.

Dr. Chan: The team at Boston Children’s Hospital is in the process of collecting information to evaluate the ICISS Health platform impact on patient health outcomes and healthcare utilization and costs. We are also calculating potential cost-savings from the platform by identifying problems earlier and intervening in time to prevent emergency department visits and hospitalizations.

As we think about the future of the platform, we are interested in going beyond the electronic questionnaires to capturing and integrating information from devices and mobile applications.

Keywords: 
PGHD, patient engagement, Health IT