Carolinas HealthCare’s Diabetes Patients Collaborate with Coaches Using Data from Smartphones and Devices
Carolinas Healthcare System, the second largest public, not-for-profit healthcare system in the U.S. (39 hospitals, 900 care locations) based in the Southeast, is committed to using technology to engage patients for better care. Last Fall, Carolinas HealthCare launched their Virtual Visit initiative to bring convenience to patients. Like other innovative healthcare systems, Carolinas HealthCare also launched a mobile app for patients to access their portal (MyCarolinas), inform about the closest urgent care location with wait times as well as offer a provider search.
“This was just the beginning,” explains Pamela Landis, AVP Information Services at Carolinas HealthCare System. “We wanted to go beyond supporting patients when they needed care to becoming part of our patients’ every day health.”
Based on the market trends showing consumer’s increasing use of both mobile and social media, Carolinas HealthCare System decided to invest in technology to provide ongoing information and support. While conducting marketing research, Carolinas HealthCare learned about consumers use of different wearables and tools to track activity, fitness, nutrition, sleep and health issues and heard about their frustrations having information housed into various apps. For instance, a person could be tracking their activity in Runkeeper and using a Bluetooth-enabled scale and blood pressure cuff. All that data is being stored in separate apps.
“We wanted to address their needs, giving them a holistic view of their health by bringing together information from all of their trackers. We leverage the health kits from the major smartphone platforms for the information aggregation,” shares Landis.
“The first app, Carolinas Tracker, available in both the Apple and Android stores, enables consumers in the community to aggregate their health data from apps and devices into one place and view a dashboard to see where they need to focus their attention (i.e. be more active and manage their health conditions).” Carolinas Tracker gives people an easy way to track their health and provides clinical context around how they are doing. Consumers can not only see how many steps they have done through their Fitbit data but also whether that is enough to reach their goals through their Carolinas Tracker dashboard.
The second app, MyCarolinas Tracker for Carolinas patients, will enable patients to bring together the same tracking information as the consumer app but will also integrate with their lab data in their patient portal. This patient app will also have goal setting capabilities and enable some patients to collaborate with their health coaches.
New Tool for Diabetes Patient & Coach Care Collaboration
Carolinas HealthCare System is planning a program to provide this new mobile app to diabetes patients, given the size of the diabetes patient population at Carolinas (90k patients), significant rise in Type 2 diabetics, the impact on other diseases and long term impact on a patient’s health.
“We are envisioning an ongoing program (i.e. not a pilot) and want to learn from the early adopters. We plan to invite patients through their physician practice and through our coaching program,” Landis adds.
Success Measures for Diabetes Coaching App Program
After launching the Diabetes program, Carolinas HealthCare System will look at “adoption metrics” since this type of technology is still in the early stage of use in the market. With many health apps today downloaded and not used, Carolinas HealthCare is interested in seeing app usage such as when and how the app is being used.
“We want to see if patients will integrate the app into their life to live better by taking ownership of their health,” explains Landis.
Carolinas HealthCare is planning to collect qualitative feedback from consumers and patients through surveys and focus groups to see if/how the app has helped the patient better understand their health and whether it has made the patient feel more in charge of their health.
“We are very interested to hear about the patient’s motivation to use the app and understand triggers, actions and rewards. We want to explore social influence. For example, do the social capabilities with family/friends/care circle help the patient stay more engaged and does this make her more motivated to use the app? Carolinas Healthcare will also look at hard core usage stats – usage/how often,” Landis explains.
"When thoughtfully designed and deployed, technology can enhance the relationship of patients with their health and their healthcare team. The solutions we are building will promote empowered patients and collaborative care delivery," explains Dr. Gregory Weidner, an internist at Carolinas Healthcare System in Charlotte, N.C. . Dr. Weidner is also the medical director for Primary Care Innovation and Proactive Health and brings vision and leadership to ambulatory care redesign and digital patient engagement initiatives.
Brigham and Women’s Primary Practice Pilots New Mobile App to Drive Patient Engagement & Collaborative Care
The story about the health decline of our citizens is being told everywhere. According to the CDC website, “as of 2012, about half of all adults—117 million people—have one or more chronic health conditions. One of four adults has two or more chronic health conditions”.
This negative trend is driving up healthcare costs and putting an ongoing strain on our healthcare system. A 2010 Robert Wood Johnson Foundation Report on Chronic Care: Making the Case for Ongoing Care states that eighty-five percent of all health care spending was on people with chronic conditions.
The positive part of the story is where the industry is heading. In the December 2014 PwC Health Research Institute (HRI) Report, two relevant health directions are described. The first is the “Do –It Yourself Healthcare movement” with implications for healthcare organizations to offer new patient engagement tools. The second is that “physician extenders see an expanded role in patient care”, where “doctor delegates” play an increasing role on the care team, which helps address physician shortages.
The real opportunity is at the intersection of the two, where patients use Do- It Yourself (i.e. self- management) tools which collect and communicate patient data (e.g. chronic condition vitals, medication adherence, lifestyle choices) to “doctor delegates”, who deliver guidance and support during the 99% of the time that the patient is living with his chronic condition.
Innovative healthcare organizations are experimenting with new technology tools and care delivery models to bring better care to their patient populations.
Care Collaboration for Hypertensive Patients
“We were looking for a way to help our Hypertensive patients get their blood pressure under control more quickly”, explains Dr. Katherine Rose, Brigham and Women’s Advanced Primary Care Associates, South Huntington. “When a patient is having trouble managing his blood pressure, we ask him to schedule a follow -up visit. We have found that some patients choose not to come in for another visit. When our nurses call patients to check- in on their blood pressure numbers, many patients don’t have them which limits the support that our nurses can provide”.
The CDC confirms that hypertension is a growing problem in the U.S; “67 million adults (31%) have high blood pressure” and only about “half (47%) have their condition under control”.
Dr. Rose and her colleagues were determined to find a better way to support hypertensive patients through continuous communication and collaboration with their care team. “After evaluating different ways to leverage technology with a strong patient experience, we decided to use the Twine Health platform. In October 2014, we started a 6- month pilot and plan to recruit one hundred patients to participate”.
Twine Health is a spin- off from MIT Media Lab’s New Media Medicine Group. John O. Moore, MD, CEO and his team have designed the Twine solution with the goal of empowering patients to be an “apprentice”, learning to be “active participants in their care, particularly care of chronic disease”.
The Twine Collaborative Care Platform allows people to co-create a personalized care plan that serve as common ground for continuous collaboration with their care team; their own clinicians, family and friends, and a health coach (sometimes staffed by the clinic and sometimes provided on-demand by Twine).
Twine Health was awarded an opportunity to pilot as a winner of the Brigham and Women’s Hospital 2014 Pilot Shark Tank competition. “We are very excited about the Twine pilot,” shares Lesley Solomon, MBA, Executive Director of the Brigham Innovation Hub. “The Brigham is dedicated to providing outstanding patient care and we believe that innovative health IT solutions like Twine will help us to improve patient experience and engagement and better enable our clinicians to address complex clinical challenges. We look forward to seeing the results of this pilot."
Hypertensive Patient Pilot
Dr. Rose explains that initially patients in her practice were recruited during an office visit. After hearing about Twine Health from her doctor, an interested patient worked closely with the Nurse to download the mobile app to her phone, set up her care plan, goals and select daily activities to support self- management.
Patient recruitment efforts are being accelerated through an email campaign with a link to the Twine mobile app and through television promotional messages in the waiting room. These communications show patients how to use the Twine Health mobile app to receive ongoing support and guidance from their nurse at the practice. Patients learn that they do not need to come in for all of their visits and can communicate their blood pressure readings and health behaviors digitally for continuous care.
Once enrolled in the Twine Health program, patient Patricia can view her daily care plan and check off activities which include completing certain activities (e.g. taking medications, walking, relaxing) and avoiding others (e.g. not eating salty foods, reducing alcohol consumption). Patricia can elect to receive reminders to take her medications, log her blood pressure readings and walk at lunch. She can monitor progress towards her goal and send a secure message to her nurse.
Nurse Nancy monitors the Twine Health dashboard to see her patient’s care plan progress and identify patients that need support (e.g. missed medications, failed to measure blood pressure, blood pressure measure out of range). Nancy sees patient’s blood pressure readings, number of days adherent and days remaining on the patient’s care plan and quickly answers patient’s questions or concerns (e.g. running out of medication, experiencing medication side effects). She sends congratulatory messages to Patricia and other patients reaching goals and encouraging messages to less engaged patients to come back onto Twine to share information and issues. Nurse Nancy creates new and modifies existing care plans working closely with her patients. She also uses the platform to check in with the patient’s doctor about care plan and medication changes.
Dr. Rose and her colleagues worked closely with the Twine team to plan their pilot.
“Not all of our patients have a smart phone which is required to access the Twine Health platform. We also needed to choose patients who would feel comfortable using a smart phone to support and extend their care. Since Twine is currently available in English, we are only offering it to selected patients”, Dr Rose explains.
“As we thought about the role of coaching and motivating our patients to better manage their hypertension, we decided to use our LPNs to support the Twine Health program. Our LPNs interface with our patients all the time and are often on their computers doing triage. At our practice, we also like to have our professional team members operating at their top of license.”
Dr. Rose wanted to incorporate summarized patient data information into their EMR and appreciated that Twine Health created a note template to capture changes in the care plan, goals and medications. The nurse copies and pastes this information into the EMR so that everyone can access the latest patient care information.
At the end of the 6- month pilot, Dr. Rose and her team will review qualitative and quantitative feedback from patients and clinicians. “We will also look at measures to see how often the patient’s blood pressure was controlled, how many blood pressure check visits were avoided, how engaged the patients were (e.g. use the platform, make better lifestyle decisions) and how satisfied patients felt (i.e. their team took better care of them).
Patients appreciate encouraging feedback from their nurse, find it motivating and feel a sense of achievement when reaching their goal. They also like being able to ask the nurse questions through the app that they may not have otherwise asked.
“Our patients are helping us enhance Twine. For example, a patient suggested that we expand the capability to add blood pressure measurements more than once a day” describes Dr. Rose.
The clinicians using Twine value understanding what is happening to the patient outside of the office visit to provide ongoing support. From a clinical perspective, Dr. Rose shares “I am excited that the app gives the patient ownership of their health. While working with one patient on his care plan, he suggested increasing the time on his stationary bike to avoid adding a medication. Since extending his exercising will help more than just his blood pressure, I was all for it”.
The Twine platform gives clinicians at the Brigham and Women's practice valuable visibility into the barriers that impact the patient’s adherence. With this insight, nurses are able to better understand and provide more relevant guidance to support the patient holistically for better outcomes.
Dr. Rose explains “there are many reasons why patients are unable to take their medications. Some are simple—the pharmacy didn’t get the prescription, and others are more complex—the patient has concerns about a possible side effect. As providers, we sometimes don’t hear about the problem for a couple of months which is lost time. With improved communication tools, we can address problems immediately, hopefully improving compliance and health outcomes”.
With only two months into the Twine Health Pilot, Dr. Rose admits that they are just beginning.
“We will be looking at the financial impact of using the Twine platform. So far we know that our nurses are spending 20- 30 minutes to set up each patient and 25- 30 minutes daily responding to and motivating patients,” confides Dr. Rose.
She appreciates that Twine Health conducts conference calls with other healthcare organizations participating in pilot programs to learn ‘best practices’ together such as incorporating Twine into existing workflows, recruiting patients, engaging patients and trying an approach for a specific patient segment.
“Ultimately we think that patients who are more engaged in their care and mindful of their choices will be healthier. We are excited to use new technologies like Twine to encourage that”, Dr. Rose concludes.
Interested in seeing Twine Health results across all hypertensive patients? Twine displays this on an aggregate level through their online dashboard.
Healthcare reform has placed increased demands on doctors who are already managing increased patient loads. As a result, doctors are spending less time with their patients.
Patients are being asked to take on more responsibility in managing their care. This is particularly challenging before and after a surgical procedure. A patient typically leaves the hospital with a stack of paper discharge instructions about medications, the follow- up visit and a list of symptoms to monitor with directions to contact the doctor if problems occur. Throughout recovery, the patient is often left to figure things out because she "doesn’t want to bother the doctor". When the patient makes uninformed decisions about medications or readiness to begin an activity level, it can set her back on her recovery path or lead to costly hospital readmissions.
Other than checking in with patients during the follow- up visit, providers are in reactive mode; patients calling with complex problems or heading to the ER.
Since patient satisfaction, care quality and costs are impacted by the current process, providers are motivated to find a solution that virtually supports the patient's needs for guidance, education and shared decision making.
Virtual Patient Support
It all started in 2007 when Dr. Jordan Shlain was treating a patient who wasn’t feeling well. After discussing her symptoms, he gave the patient his cell number and asked to please call him if she felt worse by morning. He discovered a few days later that she had developed pneumonia. From this experience, Dr. Shlain learned that although he wanted to be proactive with his care, he couldn’t depend on the patient to call with an update. His began texting patients asking “do you feel the same, better or worse?” Dr. Shlain did not take any chances and assumed that a non- response from the patient indicated there may be a problem.
After speaking with providers about not really knowing how a patient is doing post discharge, they expressed interest in daily virtual interactions with the patient as a way to increase patient engagement and prevent readmissions. Patients loved the idea of interacting electronically with their doctor on a daily basis since it would give them unprecedented access to communicate concerns and address problems in a quick and convenient way. This was the backdrop that led to the development of Healthloop.
“Since late June, we have been using Healthloop for patients who have hip and knee replacement surgery”, shares Dr. Mohan, Surgeon for a large Integrated Delivery Network. “Our team was looking for a solution that would enable us to share the experience together with our patient. We also wanted to put the patient in the driver’s seat and give them control, while we were in the passenger seat as an observer and navigator.” Dr. Mohan’s orthopedic patients are on Healthloop before surgery and throughout recovery which tends to be 1-3 months.
Dr. Andrew Goldstone, ENT Surgeon at Greater Baltimore Medical Center started using Healthloop in February with his adult and pediatric patients throughout recovery which typically lasts 2-4 weeks. Healthloop electronic communications are delivered to the parents of his young patients for ongoing support. "HealthLoop, in a technologically modern way, tries to mimic the old days when we admitted patients a day or so before and kept them as many days as we or they wanted to stay after surgery. This gave patients and their families a comfort level that most current M.D.s have never witnessed. The same goes with patients who, after ambulatory surgery, pay at the next window and go home. They have no clue how patient friendly it used to be having an extended ’hand holding‘ before returning home. I view HealthLoop as an attempt to recreate that extended comfort,” explains Dr. Goldstone.
HealthLoop enables the physician to support the patient before surgery and monitor him post discharge and between visits, engaging each patient “as if he is the most important person”. With the goal of delivering guidance when the patient needs it, Healthloop works closely with the provider organization to define the questions that patients ask at each step of the recovery process. Together, they review typical calls at day 1, 2, etc., determine the appropriate response and set up the schedule to deliver the information to the patient right when they need it.
Taking a closer look at the patient experience, Gary is referred by his primary care physician to a specialist about knee surgery. After deciding together to move forward with the operation, the surgeon quickly enrolls Gary in Healthloop to guide him before and after the surgery. Gary receives an email to complete his enrollment including his preferences for receiving Healthloop communications (i.e. email, text).
Before surgery, Gary answers questions about risk factors and receives guidance and checklists to prepare for his operation. For example, he learns how to to prepare his house to easily navigate when he returns home following surgery.
After surgery, Gary receives a daily electronic communication with a set of questions to understand how he is feeling (i.e. pain level, specific symptoms, problems with meds, etc.), personalized education materials, activity and medication reminders and a checklist of To Dos. Based on Gary’s feedback and progress, his care plan is updated and his next day’s check-in is automatically prepared.
Healthloop is designed for two way engagement. If Gary experiences any health problems, these are gathered through his check- in responses and trigger an SMS message to his care team for intervention and support.
With recent integration to Apple’s Healthkit, patient information is extended beyond daily check- in responses to include health tracking data. For example, Gary’s doctor has instructed him to take steps while healing from his knee operation. Gary’s tracker information is combined with his daily check-ins to give his care team more insight into his health status. Concerned about not enough movement, his clinician may call and learn that Gary is not moving enough because of his medication side effects which can be addressed through a prescription change.
Pilot Feedback; Patients & Providers
Healthloop wants to deliver a truly patient- centric communication channel and uses patient feedback to enhance the solution. After hearing a patient comment that the messages felt “too robotic” and “do not sound like they are coming from my doctor”, the communications were refined to be more conversational.
Another patient commented that the messages were using doctor’s words which resulted in changes to incorporate more patient vocabulary and experience. For example, questions about a blood clot were replaced with “feels like a cramp in my calf”.
Healthloop has delivered over 57,000 daily check-ins to patients and has received positive feedback about the experience:
Guidance: “I wanted to be able to say ‘I have this” and have someone come back and say that is normal and here is the process. Then all of my negative energy goes away”, “easy way for me to make sure that I was on the track with my recovery”. “The questions promoted me to be more aware of my situation”.
Convenience: “Without Healthloop. I would have called (doctor) 5- 7 times”, “This saved me a trip to my doctor”.
Access: “It was an extension of my doctor so instead of talking to a nurse and having her get back to me, I had a direct conduit to my doctor.”
“As our team developed our Healthloop, we charted out what a recovery really is. With this, I know what my patient is going through, can emphasize and say with confidence that over half of my patients have their pain under control after day 4”, explains Dr. Mohan. “We also participate in a Medical Destination Program with patients traveling to our hospital, often from out of state. After staying in a hotel for 10- 14 days, they come to see me for a follow-up visit before returning home. We are now thinking about how we can use Healthloop to manage their care from a distance to make sure that the patient has a successful recovery.”
Comments from other providers:
Patient Satisfaction: “My patients told me that they looked forward to their daily Healthloop check-ins because it felt like ‘someone was watching over me’ who really cared”.
Operational Efficiency: “For my practice, the volume of calls from patients has dropped tremendously. I notice it and my staff notices it too.” “I am thinking about eliminating the 2 week follow-up visit and to just see the patient at the 6 week visit since I can check in on their pain management, incision and any other issues through Healthloop.”
Better Quality: “Helps us pick up complications much sooner. It reinforces a plan with what to do and reminders”, “We are raising the bar on care by ensuring that we are giving the patient the pre and post-surgery education and care that they need”.
Providers using Healthloop are evaluating a set of success factors based on their program goals. In addition to lower costs which is measured over time, providers are monitoring:
Patient Engagement; Patient Satisfaction using the net promoter score.
Better Quality; Benchmarking patient progress, measuring patient’s perceptions of care quality received
Operational Efficiency; Call reduction to the practice
Regarding patient engagement, some providers are leveraging positive ratings through social media. Patients who give the highest scores (5 Star Ratings) are encouraged to share their ratings and experiences through the link provided to public review sites such as HealthGrades and Vitals. Patients who give average or below average score are asked to explain how the provider can improve. Patients have commented on everything from old waiting room magazines to being put on hold for too long when they call.
With Healthloop, “my patients tell me that they are happy with the surgery because I was right there with them. I also notice patients are much more relaxed during their follow-up appointments. That is so important to me”, Dr. Mohan concludes.
Novant Health Deploys Mobile App to Monitor Behavioral Health Patients and Proactively Provide Support
According to The Agency of Healthcare Research and Quality (AHRQ), an estimated “44 million people 18 and over suffer from mental disorders.” Further, “major depressive disorder is the leading cause of disability among adults”. This is a major concern for healthcare providers throughout the United States. As more patients struggle to manage their mental health condition, they are showing up in emergency rooms, where they are finding staff and systems ill equipped to deliver the specialized care that they so desperately need. This missed opportunity not only creates a negative experience for patients but also drives up healthcare expenses for providers.
Novant Health, one of the largest healthcare systems in the country (15 hospitals, 350+ physician practices in NC, SC, VA, & GA), is proactively helping behavioral health patients, reducing readmissions and preventing costly emergency room visits.
In 2013, Novant Health partnered with behavioral analytics company Ginger.io on a successful depression program in a Novant perinatal clinic. In 2014, Novant Health expanded the partnership with Ginger.io to address the unique needs of adult patients with depression by developing a customized care solution for this historically underserved population.
The Ginger.io Behavioral Health Program initially enrolled patients who were already engaged in a partial hospitalization program or an intensive outpatient program at the Forsyth Medical Center. In an effort to complement the standard support groups and therapy 3-5 days a week over a 12-month period, Novant Health offers patients the continuous sensing smartphone. Patients download the smart phone app solution from Ginger.io to “connect the dots” between their behavior and their health and “stay in touch with the care team between visits”, according to co-branded patient communications from Novant Health.
The smartphone app actively collects information from the patient about symptoms and medication. Based on the patient’s specific behavioral health condition (e.g., depression), she receives personalized questions to gather a specific set of data. The mobile app also passively gathers data in the background on her mobility, social interaction and sleep patterns. The patient’s active and passive information is then combined and fed into Ginger.io’s analytics engine to identify which patients are in need of intervention and to share that information through an alert with care staff. After receiving a dashboard alert, a licensed mental health professional (e.g. nurse, social worker or case manager) contacts the patient to discuss what is going on in the patient’s life based on her responses and behavior—what Ginger.io refers to as a “behavioral signature”.
Novant Health is already receiving positive feedback and insights from both clinicians and patients.
“Most innovation in Behavioral Healthcare in the past 20 years has been primarily focused on pharmaceutical development,” explains Dr. Todd Clark, Director of Behavioral Health Sciences at Novant Health. “This was necessary for treating patients in the acute phase, but there has only been minor progress related to services detecting mental illness upstream. The Novant Health Innovation Team led by Matt Gymer has created a platform in our healthcare system to leverage the cutting-edge advantage of Ginger.io for our behavioral health population. Ginger.io has revolutionized our ability to connect with patients in real time, even remotely, and allows us to provide patients with the most appropriate and timely care. This not only puts the patient on the most optimal pathway for treatment and recovery, but it also increases the number of treatment options for the patient—rather than the overused default option of the local emergency department. Ginger.io has flexed to meet our system’s particular needs, and our patients have expressed a high degree of engagement with the service.”
Patients appreciate the opportunity to reflect on their mental state and the proactive contact they receive when experiencing challenges in their day-to-day life.
According to one Novant Health patient, “I look forward to the surveys. For the first time in my life I feel that someone truly cares if I live or not. Someone cares how I feel and helps me work through those feelings. I feel I have purpose in my life again.” This is a powerful endorsement from a community in need.
Ginger.io Behavioral Health Program Expansion
Novant Health expanded the program in June to an outpatient drop-in assessment center and mobile crisis unit and then again in September to psych inpatient and psych outpatient clinics. Although these patients come into care during a crisis moment, it is important that they leave with a new tool for ongoing support and empowerment.
Based on qualitative feedback Novant Health from the clinicians and patients using the mobile monitoring solution, care teams have decided to share historical survey responses and behavior patterns with patients through a provider-facing dashboard displaying past data and care alerts. Doctors/Care Managers can share this information with the patient to discuss behavior patterns, life situations, triggers and treatment plans.
Novant Health recently rolled out the Ginger.io technology in their main Psychiatric Clinic in Winston-Salem. Psychiatrists are giving the smartphone app tool to their patients and viewing the dashboard to respond to patients in need. The doctors will also use the information gathered to enrich their conversation with the patient during their office visit.
Novant Health continuously evaluates the value of the program through key quantitative metrics including patient satisfaction and engagement, operational efficiencies and outcomes improvement based on clinically validated measurements such as PHQ-9.
In the future, Novant Health plans to extend the Ginger.io Behavioral Health Program to five other regional hospitals across their health system. The expansion is intended to deliver “a remarkable patient experience,” according to Matt Gymer, Corporate Director of Innovation at Novant Health.
Clinicians are interested in expanding the use of the Ginger.io platform to help them identify patients earlier, understand triggers for their symptoms and proactively provide needed support. This important behavioral health initiative aligns closely with Novant Health’s ability to innovate solutions to deliver proactive care to patients and customize services.
Boston Children's Hospital Monitors Young Patients with Data from Caregivers; Parents, Teachers and Coaches
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.
With 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.
Since 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.