Children with medical complexity (CMC) represent 1% of the pediatric population, yet they account for a disproportionately high level of healthcare expenditures.1 30-day readmission rates for CMC at Duke Children’s Hospital (19%) are nearly 3 times the national overall pediatric average (6.5%).2 Additionally, CMC at Duke Children’s Hospital (DCH) experience lengths of stay greater than 3 times that of healthy children (Figure 1). Finally, CMC are followed by a median of 13 outpatient physicians and 6 distinct subspecialists; therefore, communication is often incomplete, and care coordination is fragmented.3 DCH must develop innovative care strategies to better manage the overall health of this complex and costly patient population.


Figure 1: Average length of stay (ALOS) for CMC (children with medical complexity), CSHCN (children with special healthcare needs), and previously healthy patients at DCH in FY2014


With funding from Duke University Hospital (DUH) leadership (Kevin Sowers, RN, MSN; Jeffrey Langdon, MHA; Fred Johnson, MBA), we launched the Duke Children’s Complex Care Service (CCS) in August 2014 to better manage the health needs of our population of CMC with multi-specialty care centered at DCH. The CCS includes a physician, nurse-clinician, and a program coordinator who use novel risk stratification to provide proactive longitudinal care coordination, direct clinical responsibility for each child’s healthcare needs, and patient-specific complex care plans. In FY2015, the CCS program reduced average LOS for 23 enrolled patients by nearly one day (17.15 days pre- vs 16.23 days post-) and reduced total inpatient costs for enrolled patients by $646,971 (average $43,314 savings per hospitalization). To increase program capacity and build on these early successes, we must develop new tools that leverage technology.


Because a majority (64%) of all Americans now use smartphones, mobile health (“mHealth”) applications represent an important opportunity to achieve better patient engagement and coordination of a complex patient’s longitudinal care needs.4 Comprehensive care plans are a commonly recommended tool to support medically complex patients.5,6 These care plans should be comprehensive, patient-centered clinical documents that summarize the key aspects of a patient’s complex medical history and merge multiple documents in the EHR (e.g., discharge summaries, medication lists, etc). Implementation of complex care plans is challenging because currently there are no gold standards to guide content, patient engagement is challenging, and creation/updating of these plans is labor-intensive.7-9 mHealth solutions could improve the utility of complex care plans by increasing the efficiency of their deployment and increasing patient/caregiver engagement.


Technology/Intervention/Process Description

We will develop a mobile complex care plan platform with bidirectional communication between providers and caregivers. It will deliver enhanced communication functionality that will increase caregiver engagement, satisfy the unique information needs of multiple members of a patient’s longitudinal care team, and increase the efficiency by which the CCS creates and updates care plans. A new mobile complex care platform will facilitate scalability of the CCS program and improve our ability to care for a larger population of CMC.



Relevant Background and Prior Work

Currently each enrolled CCS patient has a patient-specific complex care plan created in the Maestro EHR. The care plan serves as a core clinical document and it provides clarity on the care coordination priorities for each patient and their caregiver(s). Finally, it serves as a central information hub for all members of the care team and insures that all involved stay on the same page with the same set of clinical details and care goals.


Table 1: CCS Complex Care Plans – Gaps in the Current Model

Care Plan Features



“Living” longitudinal document that is relevant across all episodes of care




Created/updated by experienced clinicians




Patient-centered and transparent

(e.g., parent-driven goals of care section; paper copy of care plan given to families)




Maintain and add Maestro and My Chart-driven enhancements

Comprehensive list of all members of outpatient/community care teams




Reconciled medication list




Narrative clinical summary

(Answers “who is this patient?”)




Emergency/contingency action plans




Visible in Maestro EHR




Shared/routed to outpatient providers




Electronic copy accessible to families  


My Chart solutions (computer and mobile app)

Bidirectional communication that allows family-driven care plan updates between episodes of care (“between-visit contacts”)



My Chart direct messaging with CCS team

Care plans proactively pushed to specialty providers prior to upcoming appointments (“pre-visit planning”)


My Chart and Maestro solutions (computer and mobile app)


Proposed Project

To meet these gaps in the current model and expand the value of our patient-specific complex care plans, we propose improvements to existing Maestro Care and My Chart tools to create a mobile app-based platform for delivery of complex care plans. Essential features of such a platform will include:

  • Read-only copy of the most updated care plan version -- This will allow families to print hard copies and share with other care team members as needed (e.g., out-of-network PCP without access to Epic©).
  • Enhanced bi-directional communication/messaging for between-visit contacts – This will allow families to message the CCS team with real-time updates (e.g., clinical status, medication changes, etc) that are then efficiently incorporated into the care plan. This level of direct, timely communication between caregivers and the CCS team (who has clinical “ownership” for the child and intimate understanding of his/her unique needs), will provide higher value, patient-centered care.
  • Pre-visit planning – Bi-directional communication system for real-time updates from caregivers will also allow them to directly communicate their most pressing concerns before upcoming clinic visits. The CCS team will then proactively push this list of concerns and an updated care plan to outpatient providers before upcoming visits, thereby ultimately facilitating more efficient clinic visits.
  • Continued integration with Maestro Care. To maintain clinical relevance and visibility, care plans must continue to live in the EHR.



This mobile complex care plan platform will empower parents/caregivers of our most medically fragile and costly pediatric population to actively engage in the development of longitudinal care goals that follow their children across sites and episodes of care. By providing a centralized, shared hub for relevant clinical information that is directly managed by an experienced pediatric clinical team, this model for enhanced caregiver engagement will improve how we coordinate complex care


Milestones, Metrics, and Hurdles

First Quarter Milestones

  • 80% of CCS patients enrolled in My Chart
  • 90% of My Chart-enrolled CCS patients downloaded the mobile app to a device (phone, tablet)
  • New My Chart and Maestro Care workflows for mobile care plan deployment ready to go-live

Second and Third Quarter Milestones

  • 80% of My Chart-enrolled CCS patients received a care plan electronically routed by CCS team
  • 50% of My Chart-enrolled CCS patients returned 1 or more electronic pre-visit planning questionnaires
  • 80% of completed pre-visit planning questionnaires and updated care plans pushed by the CCS team to outpatient clinicians at least 24 hours before an upcoming clinic appointment
  • 90% of care plans updated by CCS team at least quarterly (on average)

Fourth Quarter Summative Measures

  • Continued achievement of all Q2 and Q3 targets
  • 1% reduction in 30-day readmissions (impact of comprehensive CCS program)
  • 0.5 day reduction in average LOS for CCS patients (impact of comprehensive CCS program)
  • Parent/caregiver satisfaction surveys (to be collected every 6 months)


Risks and Mitigation Plans

Maestro Care and My Chart is limited in its current ability to fully support this proposed mobile care plan deployment and bidirectional communication system with caregivers. However, with the appropriate degree of support from Maestro and My Chart experts, new workflows can be developed to achieve our goals. Though new workflows will be necessary, none will require significant de novo builds/enhancements to the EHR – we plan to operate within the existing system. The Open Notes initiative in Maestro Care will launch on 1/1/2016; it will increase EHR transparency to patients and will facilitate sharing of documents, including care plans.


Funding Request and Use of Funds

Use of Funds


Salary support for My Chart/Maestro developer(s) (development, testing, optimization, and ongoing support for new workflows)

$30,000 ($150/hour x 200 hours)

Redcap project database (updates and ongoing support)


Statistical analysis





Other Assistance Required

Continuation of current DUHS funding for the key clinical members of the CCS team (physician, RN-clinician, program coordinator) is essential. Mobile complex care plans cannot be deployed without a clinical team that has content expertise. Timely access to data via Performance Services and statistical/database support for outcomes analysis will be key to track program progress.




1.           Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A. Patterns and costs of health care use of children with medical complexity. Pediatrics. Dec 2012;130(6):e1463-1470.

2.           Berry JG, Toomey SL, Zaslavsky AM, et al. Pediatric readmission prevalence and variability across hospitals. Jama. Jan 23 2013;309(4):372-380.

3.           Nageswaran S, Ip EH, Golden SL, O'Shea TM, Easterling D. Inter-agency collaboration in the care of children with complex chronic conditions. Academic pediatrics. May-Jun 2012;12(3):189-197.

4.           Center PR. US Smartphone Use in 2015.  April 1 2015.

5.           Hong CSS, A.L.; Ferris, T.G. Caring for High-Need, High-Cost Patients: What Makes for a Successful Care Management Program? : Commonwealth Fund; August 2014 2014.

6.           Silow-Carroll S EB, Rosenstein S. Care Coordination for California’s Children and Youth with Special Health Care Needs: Building Blocks from other States. Health Management Associates;2014.

7.           Amir O GB, Gajos KZ, Swenson SM, Sanders LM. From Care Plans to Care Coordination: Opportunities for Computer Support of Teamwork in Complex Healthcare. Paper presented at: SIGCHI Conference on Human Factors in Computing Systems2015; Vancouver, B.C., Canada.

8.           Dykes PC, Samal L, Donahue M, et al. A patient-centered longitudinal care plan: vision versus reality. Journal of the American Medical Informatics Association : JAMIA. Nov-Dec 2014;21(6):1082-1090.

9.           Lion KC, Mangione-Smith R, Britto MT. Individualized plans of care to improve outcomes among children and adults with chronic illness: a systematic review. Care management journals : Journal of case management ; The journal of long term home health care. 2014;15(1):11-25.