Dr. Eugenia Chan sat patiently waiting for her fidgety first grade patient and her frustrated mother to answer her question. "How was the new medication working to help Janie with her ADHD"? Janie's mom hadn’t had a chance to fill out an ADHD behavior questionnaire in the chaotic waiting area, so she tried to summarize her impressions since their last doctor’s appointment a few months ago.  She hadn’t heard specific feedback from Janie’s teacher, and had also forgotten to give the ADHD questionnaire to her teacher so that they would understand how she was doing in school.

In 2011, Dr. Chan, MD, MPH, a developmental-behavioral pediatrician and health services researcher in the Division of Developmental Medicine at Boston Children’s Hospital, 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, on the development of a new software tool, eDMC (electronic Developmental Medicine Center).

Their goal was to gather and interpret the information from parents and teachers more effectively and gain a more comprehensive view into patient behavior between visits. The doctor determines when the system 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, she 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.

Clinicial InterfaceWith this information, Dr. Chan is able to determine how her patient is doing throughout the day, week and over time. During the visit, she shares this information with her patient and family, points out trends and discusses what has transpired. On the graphs, each line shows data from a different caregiver; parent, teacher and coach. The clinician can also drill down to see specific symptoms and their ratings that are incorporated into a score. With the treatment plan in mind, the clinician evaluates the data and focuses in on any discrepancies to determine what is really happening. This exchange supports her clinical decisions and enables her to participate in shared decision making with her patient and his family.

“I’ve already started using the system to work with my adolescent patients who want to go off their medications. When I agree to let them try coming off meds, I suggest that we use the questionnaires to monitor results. At the next appointment, patients are often surprised to view parent and teacher ratings and comments, that she was ‘disruptive’ or was ‘unable to pay attention’”, describes Dr. Chan.

Another feature of the platform is the ability to notify the clinician when there is a “red flag” patient 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.

Parent InterfaceSince the program started, over 3,000 pediatric patients have participated.  One parent comments 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. Fleeger adds that 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”.   Dr. Leonard Rappaport, Chief of the Division of Developmental Medicine at Boston Children’s, says that the platform “is the first major improvement we have made in individualized care for developmental disorders in the past two decades.”

Currently the clinician can copy patient level summary information from the system into the EMR. Although the platform is web- based, Dr. Chan mentioned they were creating a mobile interface for access through smartphones and tablets.

Expanding ICISS Health; More Patients & Populations

In 2012, Dr. Chan and Dr. Fleeger renamed the platform the Integrated Clinical Information Sharing System (ICISS Health) to 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”.

For each new condition, they 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” explains Dr. Chan. “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.”

The team at Boston Children’s is in the process of collecting information to evaluate the ICISS Health platform impact on patient health outcomes and healthcare utilization and costs. Dr. Chan also mentioned their interest in calculating potential cost savings from the platform by identifying problems early 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”, Dr. Chan concludes.