See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/287993453

Pilot-Testing a Pediatric Complex Care Coordination Service

Article  in  Journal of Information Technology Teaching Cases · December 2015

DOI: 10.1057/jittc.2015.14

CITATION READS
1 549

3 authors:

Marco Marabelli Sue Newell

Bentley University Bentley University
98 PUBLICATIONS   1,306 CITATIONS    197 PUBLICATIONS   8,986 CITATIONS   

SEE PROFILE SEE PROFILE

Janis L. Gogan
Bentley University
117 PUBLICATIONS   940 CITATIONS   

SEE PROFILE

Some of the authors of this publication are also working on these related projects:

Interorganizational Systems View project

Internet Payment Systems View project

All content following this page was uploaded by Marco Marabelli on 24 December 2015.

The user has requested enhancement of the downloaded file.

 1

Pilot-Testing a Pediatric Complex Care Coordination Service

Note: this is an authors’ version of the teaching case and is not provided for commercial use. The final
version will be available online soon at http://www.palgrave-journals.com/jittc/index.html

This version of the paper should not be distributed to students for teaching purposes.

(Please cite as follows: Marabelli M., Newell S., Gogan J. 2016. Pilot Testing a Pediatric Complex Care
Coordination Service. Journal of Information Technology – Teaching Cases).

Introduction

In January 2012 Dr. Nathalie Major-Cook, a pediatrician at Children’s Hospital of Eastern Ontario
(CHEO) and Most Responsible Physician on the Pediatric Complex Care Coordination Project, was
preparing for a meeting with the Project’s Steering Committee. The Project, a pilot test of a proposed
multi-organizational coordination service for 23 children with complex medical needs, was scheduled to
end on March 31, 2012, coinciding with CHEO’s fiscal year-end. The Steering Committee felt the time
had come for CHEO and its partners to authorize a transition from a pilot project to an ongoing program
providing coordinated services to about 100 children in the Ottawa-Champlain area. These patients
represented less than 1% of all children in the area, yet accounted for one third of total child healthcare
expenditures. Several hurdles needed to be overcome before an ongoing service could be established.

Patients in the pilot test (ages 2 through 16) relied on technologies such as tracheostomy tubes,
ventilation, gastrostomy tubes, intravenous medications, and other special equipment. Most had
experienced multiple surgeries in their young lives, and regularly saw several medical specialists (e.g.,
endocrinologist, neurologist, respirologist, etc.) and other care givers (speech therapist, physical therapist,
etc.). The children suffered from various conditions and shared three common threads: technology-
dependent (as described above), medically complex due to their diverse medical needs and fragile because
they were at high risk of a life-threatening episode. In contrast, patients diagnosed with less rare pediatric
conditions (such as diabetes or cancer) would be served by specialty clinics that provided focal points for
care, and by advocacy groups specialized in those illnesses. Before the pilot test, there was no such focal
point for technology-dependent, medically complex, fragile children, whose parents were worn out from
keeping appointments with the many different clinicians in their child’s life and many trips to emergency
rooms. In 2010 the Pediatric Complex Care Project had been launched to test new roles (such as Most
Responsible Physician and a Nurse Care Coordinator), improve existing information-sharing processes
and systems, and promote better healthcare coordination. Parents now carried a simple paper form along
to appointments. Dubbed “SPOC” (Single Point of Care; Exhibit 1), this form summarized a child’s
condition and his/her current medical and psycho-social care providers and services.

Dr. Major-Cook was cautiously optimistic that CHEO’s newly-appointed CEO, Alex Munter, would
share her enthusiasm for the Project. Munter previously led the Champlain Local Health Integration
Network (LHIN), so he was well acquainted with many of the people and all of the organizations
involved in the pilot test. However, in his prior work Munter had focused on senior services, so Dr.
Major-Cook wondered if he would be as enthusiastic about a program that would serve only 100 children.
 2

Glancing at her watch, Dr. Major-Cook saw she had a few minutes before the Steering Committee
meeting would start – enough time to review the SPOC of a child whose parents were planning a family
vacation in Florida. Knowing that the family’s Nurse Care Coordinator would contact the emergency
department of a Florida hospital to let them know when the family would be in town and to brief them on
the child’s unique medical issues, Dr. Major-Cook carefully reviewed the SPOC form to verify the
medical information on it. Then she rose from her desk to walk over to the conference room.

Health Care in Canada

Canada consisted of ten provinces and three territories. Universal healthcare was publicly funded through
federal, provincial and territorial taxes; the Canada Health Act of 1984 laid out five key health care
principles (Department of Justice, Government of Canada, http://laws-lois.justice.gc.ca/eng/acts/C-6/ ):

• Public Administration by an authority accountable to the provincial or territorial government.

• Comprehensive: all necessary services provided by hospitals and medical and dental practitioners.
• Universality: health insurance coverage provided on uniform terms and conditions.
• Accessibility: reasonable access to necessary medical services without financial or other barriers.
• Portability: insurance covered even when individual moves within Canada or travels abroad.

Proponents of Canada’s universal health care system pointed to positive outcomes such as a favorable life
expectancy, low infant mortality and other indicators. Naysayers criticized long wait times for necessary
services, non-covered elements such as drugs (for which many Canadians purchased private supplemental
insurance) and other challenges. In 2004 a Ten Year Plan to Strengthen Health Care, prepared by Health
Canada (the federal department “responsible for helping Canadians maintain and improve their health”
(http://www.hc-sc.gc.ca/ahc-asc/index-eng.php) called for reforms in primary health care, wait time
reductions, and prevention and public health. In recent years, eHealth initiatives had received funding to
develop electronic medical records and enhance telehealth services, yet in 2012 Canadian hospitals’
adoption of electronic medical records lagged behind their US counterparts (Exhibit 2).

Covering an area of more than 400,000 square miles, Ontario is Canada’s largest province by population,
with about 13 million people. Ontario residents carried Ontario Health Cards to gain access to health
services. In 2006 the Ontario Ministry of Health passed the Local Health System Integration Act, creating
fourteen community-based Local Health Integration Networks (LHINs) charged with planning,
prioritizing, funding and coordinating services delivered by hospitals and other community entities (such
as those providing long-term care, mental health, substance abuse and other non-hospital services). Each
LHIN had a board of nine members. Collectively, the LHINs oversaw more than $20 billion in health care
funding (Ontario Province directly provided another $18 billion). Recent priorities included strengthening
primary care, investing in eHealth, reducing acute care wait times, and improving patient safety.

A 2012 Ministry of Health report (Ontario’s Action Plan for Health Care) noted that access to high
quality, cost-effective health care had improved, and discussed remaining challenges. The report
attributed 25% of health care costs to preventable illnesses due to smoking, poor diet, and insufficient
exercise, and noted that more than 270,000 emergency room visits “could have been treated in alternative
primary care settings,” and that too many patients were re-hospitalized following discharge, due to
problems arising from insufficient care received at home. The Action Plan identified three key priorities:

1) Keep Ontario Healthy (reduce childhood obesity, reduce smoking, expand cancer screening);
2) Faster Access and a Stronger Link to Family Health Care (help primary care physicians
provide faster, more convenient care and provide home services, especially to frail elderly);
3) Right Care, Right Time, Right Place (use evidence-based best clinical practices, use technology
to enable timely care; provide care close to home).
 3

The report concluded: “With greater patient-centered integration across all facets of the patient journey,
these patients will have a better coordinated plan of care, while gaining greater value from the system.”

CHEO

CHEO, located in the Ottawa’s downtown area Ottawa Ontario, was a 165 bed tertiary-care teaching
hospital affiliated with the University of Ottawa Medical School. CHEO served about 1.2 million people
in Ottawa, Eastern Ontario, Western Quebec, Nunavut and parts of Northern Ontario, and was the second
largest hospital in the Champlain LHIN. In 2011 CHEO had more than 6,500 inpatient admissions, 7,000
inpatient surgeries, 7,000 visits to Surgical Day Care, 10,000 visits to the Medical Day Unit (for
chemotherapy, dialysis and other treatments) and about 170,000 ambulatory clinic visits. About 165
physicians and 600 nurses provided care. CHEO’s website described its pediatric emergency room as
“one of the busiest in the country, treating more than 60,000 patients a year.”

Like many hospitals, CHEO struggled to keep pace with state-of-the-art (and expensive) hospital
information technologies, yet was making progress. For example, the radiology department’s adoption of
PACS (Picture Archive Communications Standard), made it possible for CHEO physicians to view digital
images instead of x-ray films. PACS use was now so routine and widespread that CHEO committed to
participate in a common shared database for radiology images. Once implemented, a patient would be
able to get X-rays, CT scans or MRIs at locations outside Ottawa, and CHEO physicians could read and
interpret the images, in real time. Thus, a physician might be able to reassure parents that their child could
be treated locally instead of traveling to CHEO, which as a teaching hospital wanted to handle the more
complex cases that required higher level specialty care.

In 2010 CHEO began a multi-year project to implement an in-patient electronic medical record (EMR).
By 2012, pharmacy automation and smart medications administration were nearly complete, and by 2013
the hospital hoped to complete the inpatient and ambulatory EMR rollouts and also implement a
laboratory information system from Epic Software. By 2015, CHEO’s Chief Information Officer hoped to
move into a third phase of work: an interoperable system supporting electronic health records - containing
information from CHEO, primary care providers and other providers - would enable electronic health
records (EHRs) to be shared between CHEO and various community partners and accessible to pediatric
patients’ parents.

Need for Coordination: “Like a Committee with no Chairperson!”

Since 1994, a Family Forum met monthly to provide an advisory role to CHEO’s Board of Trustees and
Quality Management Council. Comprised of 15-20 parents or former patients and 8 CHEO staff, Family
Forum considered issues, concerns and priorities for CHEO patients and their families. Family Forum had
initiated resources such as a small in-hospital library (where parents could find information about their
child’s medical condition) and a lounge for family members of hospitalized children, with shower
facilities, television, Internet access and kitchenette. A perioperative initiative made it possible for parents
to be with their child as s/he received anesthesia and when the child awoke following surgery. Family
Forum had also pushed CHEO to invest in EMRs, EHRs, and other IT-based information systems for
clinical coordination.

Each year Family Forum reached consensus on priorities for the coming year. In 2007 discussion had
centered on care coordination, which was particularly problematic for technology-dependent, medically
complex and fragile children. One parent had explained:

“When your child has a complex case involving multiple specialists with no standard cure, you
enter a tangled web of medical coordination. Every clinic provides excellent outpatient services
but as a group there is a complete lack of coordination, like a committee with no chairperson!”
 4

Another Family Forum member noted, “Each doctor sees their piece but not the total child.” This parent
believed his child’s health had been “compromised” because of “mixed or absent communication between
specialists.” He added:

“We constantly questioned if we had done all we should have. Did we tell specialists important
information, such as a recently-discovered drug allergy? Did each team member have a full
picture of our son’s needs and how his different conditions affect his overall health?”

A clinician observed: “Parents tell us that while they are experts on their child, they are not medical
experts, nor are they experts on the system of care. That’s where we can help.”

Family Forum met with Michel Bilodeau (CEO at the time) to express their concerns. Bilodeau recalled:

“Parents essentially acted as case managers for their children ... Some regularly visited five or
more clinics. They were frequent users of Emergency and their child would be hospitalized from
time to time. They were also heavy users of the Community Care Access Centre (CCAC) and
Ottawa Children’s Treatment Center (OCTC).”

CCAC developed customized care plans in conjunction with school nurses, dietitians, occupational or
speech therapists and other providers. OCTC provided rehabilitation services for children with physical,
developmental and behavioral issues. Ottawa Children’s Coordinated Access (OCCA) provided referrals
for mental health and developmental needs. Natasha Tatartcheff-Quesnel from OCCA commented:

“Families are saying ‘we can’t do this anymore. We can’t be our own patient coordinators. We
can’t manage the multiple appointments. We just can’t do it anymore. We need you to design a
system that makes more sense for us as patients.’”

Technology-dependent, medically complex and fragile patients did not fall under any one umbrella of
care (Exhibit 3). These children might sometimes get urgent care that could have been prevented, and
they risked longer hospitalizations because of the fragmentation of effort and information. Families
described two main concerns: risks to patient safety and time demands. Poor coordination could give rise
to serious medical errors, such as one specialist prescribing a new drug that was incompatible with a drug
recently prescribed by another specialist. Parents experienced great stress in attempting to manage and
coordinate different specialists and to ensure that all relevant information was up to date. Moreover, since
appointments were not centrally coordinated, parents sometimes brought their children to hospital several
times in a week, for different exams with various specialists. This major source of stress led some parents
to quit their jobs or drastically reduce their working hours in order to care for their children. One parent
stated: “Taking care of my child has become a full-time job. If she’s not sick, then I’m organizing issues
for her medically.”

Shaundra Ridha, a graduate student in a Master’s in Health Care Administration program, was hired to
research other hospitals’ approaches to meeting the needs of this patient population and lead the
development of a model of care coordination In January 2008 a “Working Group” on complex care
coordination was formed, comprised of Dr. Major-Cook (CHEO), Ann Marcotte (OCTC), Natasha
Tatarcheff-Quesnel (OCCA), the Home Care Manager (CCAC), Shaundra Ridha (CHEO) and Tammy
DeGiovanni (CHEO). The working group met regularly; participants were jointly responsible for all
aspects of proposal development for a “Partnership Project,” based on the following understanding:

“The Partnership Project objectives are to provide family-centered comprehensive care

coordination across the system, facilitate communication and collaboration among care
providers, while relieving the burden of care coordination on families.”
 5

Ridha worked part-time on the literature review during spring and summer 2008. One key finding: a
Patient Centered Medical Home (focal point for a patient’s health care) could improve complex care
coordination. The American Academy of Pediatrics introduced this concept in 1967 by proposing that a
primary care physician would hold a child’s complete medical record, and thus have all the information
necessary to coordinate the child’s care. Recently the American College of Physicians stated that a
Responsible Physician (not necessarily a primary care/family practice physician) would comprise the
Medical Home, and this clinician would have access to patient medical information via “registries,
information technology, health information exchange and other means to assure that patients get the
indicated care when and where they need and want it…” (www.acponline.org). While Ridha did not
identify initiatives that specifically targeted technology-dependent medically complex and fragile
children, she saw potential value in several care models proposed for patients with chronic conditions,
including one by Wagner et al. (1999, p. 58), who stated:

“Effective chronic illness care is delivered by a prepared provider team who engage
productively with an activated, informed patient. Preparation means having the necessary
expertise, information, time and resources to assure effective clinical management. Patients
must also have the information and confidence to make best use of their involvement with their
practice team.”

Ridha’s review identified key requirements for successful coordination: a Most Responsible Physician,
supported by a care coordinator who would have access to a complete, accurate and timely electronic
health record describing care each patient received in hospital or from external providers; a process for
convening all applicable care providers, clear understanding of each caregiver and service provider’s role;
and standardized documentation for families. Ann Marcotte (OCTC), Natasha Tatartcheff-Quesnel
(OCCA), and Dr. Major-Cook (CHEO) met often with Ridha to translate what she was learning into ideas
for the pilot test project proposal. Marcotte, Tatartcheff-Quesnel and Major-Cook were already in the
habit of getting together socially over dinner. With their help, Ridha created a model specifying that a
Family Focused Team, including patient, parents, and relevant participants from CCAC, CHEO, school
and OCTC would meet periodically to review each child’s progress and care plan.

Discussion with the Family Forum yielded helpful feedback from parent representatives. One parent
described a notebook she created, containing a record of her child’s visits, orders, and procedures, and a
short “cheat sheet” of her child’s “key information” which she brought along to every appointment with a
clinician, so as not to forget important details that the clinician would need to know about her child.

In December 2008 a high-level proposal for care coordination was presented at a national health care
conference, and in 2009 funding was provided to prepare the detailed pilot project proposal, to investigate
the feasibility of developing an electronic health record (EHR); fund and appoint a Most Responsible
Physician, a Coordinator, and a Project Manager; set specific outcome goals and design a
methodologically sound evaluation study to measure project outcomes; establish project inclusion criteria
and identify patients meeting the criteria; agree on a process for selecting 20 patients to participate in the
pilot project; and develop a budget for the project, to start in March 2010.

CEO Michel Bilodeau had many friends and acquaintances in the health care community, having been in
Ottawa for more than 25 years. He met with the executive directors of CCAC and OCTC to explore how
to fund the Coordination of Complex Care Pilot Project and was pleasantly surprised that CCAC readily
agreed to fund the costs of both the nurse who would serve as Lead Care Coordinator, and a Project
Manager. With that commitment, the pilot test got a green light.

In a summer 2010 setback, CHEO’s CIO reported that resources could not yet be allocated to an
electronic health record. The long-term plan to implement electronic medical records on CHEO inpatient
 6

and outpatient units and in the pharmacy and laboratories was scheduled to begin in June 2010 for
completion by 2014. An interoperable EHR that could work with community partners was scheduled
much further out, the CIO explained – no earlier than 2015. He asked the proposers for patience while the
IT organization worked to lay a foundation for interoperable health record exchange. Thus, while the
team looked forward to a day when each patient’s accurate and complete health record would be
accessible whenever and wherever needed, the pilot project would work on ‘designing’ the logic of a
future IT-based EHR, yet for now its applications would be limited to a paper-based information system.
At that point, someone recalled the “cheat sheet” that one parent took along to her child’s medical
appointments. The parent was pleased to be asked for a copy, and this became the starting point for the
design of SPOC, a paper-based information system that team members hoped would eventually be
replaced by an electronic health record.

Dr. Major-Cook, whose full-time salary was already covered by the Academic Health Science Centre’s
Alternate Funding Plan (AFP), was tapped as Most Responsible Physician (MRP) for the pilot test. Ridha
drafted a request for funding, resulting in the AFP agreeing that Dr. Major-Cook could devote two half-
days a week for this new role in the CHEO out-patient clinic, funding was sought for a part time nurse
practitioner to backfill Dr. Major-Cook on the inpatient units when she was in clinic and a full time nurse
coordinator to care for 6-8 of her patients on the in-patient complex care unit. Dr. Major-Cook also
responded to urgent care need either through the outpatient clinic or emergency for the patients enrolled
in the pilot project. Funding was also sought for a project manager, a CHEO-based masters prepared
nurse

Patient inclusion criteria for the pilot test focused on three aspects: technology-dependent (child relied on
a tracheotomy, oxygen mask, gastric tube, wheelchair, or other device), medically complex (needing to be
seen by five or more specialists on a regular basis), and fragile (those children were who, during a health
crisis required prompt and/ or urgent assessment because of the potential for a life threatening event). The
project proposal further specified that only patients age 2 to 16 would participate in the pilot test. Babies
under age 2 were excluded in order to ensure that the team would have two years’ worth of data about
each child’s health-care history to compare with data gathered during the pilot test (this decision was
suggested by an advisor from CHEO’s Research Institute1, included on the team to ensure a solid study
methodology). Other technology-dependent, medically complex and fragile patients ages 2 to 16 would
be assigned to a control group, so their care history could be compared with the treatment group.

As soon as funding was committed late in 2009, it was possible to hire a part time project manager and
full time nurse coordinator. CEO Michel Bilodeau chaired a project Steering Committee, comprised of:

• CHEO:
o Two parents from Family Forum,
o VP of Patient Services/Chief Nursing Executive
o Complex Care Project Director
o CHEO Ambulatory Care Operations Director
• OCTC: CEO and a Program Administrator
• CCAC: Executive Director and Manager of Client Services Pediatric Program
• OCCA: Representative of Champlain LHIN

In November 2009, Chantal Krantz, who had been at CHEO for more than 15 years, most recently as a
Continuing Care Coordinator, agreed to take on the Project Manager role. She learned that about 600
patients in the area fit the three main criteria (technology-dependent, medically complex, fragile). After

1 The CHEO Research Institute (CHEO-RI) was an independent research-based unit of CHEO.
 7

eliminating patients younger than 2 years or older than 16 from the pool, a letter was sent to parents of the
remaining children, describing the project and offering them an opportunity to be considered for it (from
the pool of eligible candidates, 23 would be randomly selected; others would go on a wait list in case of a
mid-project vacancy). Some parents of older children declined the opportunity – presumably because over
the years they had developed their own ways of navigating the complicated care system. All told, 53
families requested participation; 23 were selected for the pilot and 20 were assigned to a control group (of
whom, 10 were on a wait list). See Exhibit 4.

Dr. Major-Cook, Chantal Krantz and Allison Budge (the new Manager of CCAC) interviewed nurses for
the role of Lead Care Coordinator, and selected a former cardio-vascular nurse coordinator . She would
play a dual role: as Lead Care Coordinator (the CHEO liaison for all families in the project) and as
Family Coordinator for 15 patients (CCAC and OCTC provided family coordinators for eight patients).
Family Coordinators connected patients’ parents with Dr. Major-Cook and various specialists and the
primary care provider. When a child needed care or a parent had a question, or if the current system could
not address the care needs, they were to contact their coordinator. The coordinator would check with Dr.
Major-Cook who (when needed) would check with the appropriate specialist and provide an answer to the
coordinator (e.g., suggesting a change in medication or recommending a visit or hospitalization). See
exhibits 5 and 6.

A Pilot Test: April 1 2010 to March 31, 2011

At the start of the project the Lead Care Coordinator’s first task was a big one: she had to start reviewing
patient charts (from CCAC, CHEO, and OCTC) in order to create, for each enrolled patient, a family
binder containing relevant detailed medical history and the SPOC two page medical synopsis (Exhibit 1).
This document had evolved considerably from the parent’s personal version. Chantal Krantz, feeling that
some information that the mother emphasized needed to be re-organized, and that some information that a
physician or nurse would want to see was not on the mother’s “cheat sheet,” sought advice in several
rounds of review with specialist physicians, emergency physicians and nurses at CHEO, family
pediatricians and other community caregivers, to redesign the form for maximum utility. It was brought to
the Advisory committee for final approval for use prior to accepting patients into the new pilot.

The nurse reported that gathering information was a challenge, especially for older children with huge
medical records from CHEO. She visited the offices of CCAC and OCTC to review their records, and
was also in touch with each child’s family pediatrician to get additional information. She also came to
realize that, even at CHEO, some specialist physicians kept “shadow charts” containing important
information about a child that did not get into the hospital’s central medical record. In April-May she
struggled to gather the necessary information for just eight children. She explained to Krantz,

“Going through all these medical records is a big undertaking, but we want to be as accurate
and complete as possible. Sometimes as I progress through the records I’ll see, whoops, this
diagnosis was left off, or other things got lost along the way. It takes a lot of time to get this
right, so initial enrollment of patients will take longer than we initially thought.”

Dr. Major-Cook wrote the medical summary before each patient’s intake visit for the pilot project. At
intake visits, Dr. Major-Cook reviewed the medical history and SPOC with parents, in order to verify that
all relevant facts such as diagnoses, immunizations, tests, emergency room visits, surgeries, social
services, etc.) were correct.
 8

Parents also filled out a baseline CANS (Child and Adolescent Needs and Strengths) form at this time.
Widely used in social services, a CANS form captured information about the child and parents (or foster
parents) in categories indicated below (see http://www.praedfoundation.org/index.html) :

• Youth Life Domain Functioning (e.g., sleep, recreation, school attendance and behavior)
• Youth Strengths (e.g., interpersonal, optimism, resiliency)
• Youth Behavioral and Emotional Needs (e.g., depression, anxiety, anger control)
• Youth Risk Behaviors (e.g. suicide risk, danger to others, fire setting)
• Acculturation (e.g., language, identity ,cultural stress)
• Caregiver Strengths (e.g., supervision, mental health, safety)

It took about 25 minutes for a parent to answer all the questions on the CANS and for the Family
Coordinator to review it with them. Parents also filled out a baseline Care Diary.

After reviewing the charts, SPOC, CANS, and care diary, and consulting with specialists, Dr. Major-
Cook prepared a Medical Roadmap for each child, indicating tests, procedures and follow-up visits the
child would need over the next several years. With all this information in one place, parents could refer to
it for reminders to book appointments.

In preparing Medical Roadmaps, Dr. Major-Cook was surprised to discover that some parents, no doubt
overwhelmed by the sheer number of planned and emergency visits they made to CHEO, had not kept
their child’s basic vaccinations up to date. Also in several cases parents had not followed up with
specialists who asked to see the child again in six months or a year. Blood tests for multiple specialists
could be done once rather than each specialists visit. In her view, these findings offered tangible evidence
that a Most Responsible Physician could produce immediate value.

Soon after each patient’s intake visit, a Family-Focused Team Meeting was convened with patient and
parents, Dr. Major-Cook, the Nurse Coordinator, one or more specialist physicians or nurse practitioners,
CCAC, a school representative, a social worker from OCTC, and the community primary care physician.
Parents were presented with the binder containing their child’s medical history, a section with contact
information for various useful services, the child’s Medical Roadmap, and a SPOC. Parents were advised
to add information into the binder as they received services, and to carry the SPOC around with them (and
add relevant information to it as well) to every visit to CHEO, the family pediatrician, and social services.
The nurse was introduced as the Family Coordinator for 15 of the 21 patients, and (as Lead Coordinator)
CHEO point of contact for all patients. She commented, “If you lose your SPOC, don’t worry – I’ll have
a copy here for you, and I will help you keep it up to date.” Dr. Major-Cook added, “Always call Tara
first if you have a CHEO question. She can make your question a high priority, and if I need to be
involved, she will ensure that you can see me.”

It took from April 2010 until nearly October to enroll all 23 patients. During those six months, both
successes and challenges were noted. In one example of a challenge, a parent, who had been led to
believe that all areas of CHEO would be well informed about the pilot test complained:

“We went to the Emergency room one evening, but they had no clue what the program or this
SPOC was all about. We were treated like any other patient. I thought we weren’t going to have
to repeat our story another fifty times!”

Responding to this complaint, Krantz and Dr. Major-Cook visited the Manager of ER and other CHEO
units to educate physicians and nurses about Complex Care Coordination. Soon, awareness began to
build, and positive feedback began to flow in. One parent commented, several months into the project:
 9

“Family members have suffered from anxiety, depression, lack of sleep. Once taken under the
wing of the Coordination of Care team, our stress went away. Suddenly the committee of people
caring for our son had a chairperson; the ship was finally sailing in a straight line. We have a
plan to follow and only one person to call. Now, when we put our son to bed we know that
everything that should be done has been done, and if something should happen we have access
to the resources that can address it properly.”

The nurse, initially overwhelmed by the flood of information she gathered to help Dr. Major-Cook
produce the family binders, reported in September 2010 that she had hit her stride as a coordinator. She
offered an example of a recent intervention on behalf of a family:

“It takes time to develop trust. This family had stopped doing recreational activities outdoors
because the child has a life threatening respiratory condition. By summer we had developed
such a nice relationship that when they expressed a wish to go camping, I offered to call the
closest hospital and send them the SPOC, and I spoke to the 911 responders for that area: ‘This
child is going to be here these three days; if his respiratory condition kicks in, here’s how you
treat it, this is what you do.’ Once I got confirmation from the hospital and 911 that they had
received the information, I called the family to let them know they didn’t have to worry; they
could go and have a great time. That was a big step.”

There was also a very difficult side to the developing relationships. Late in 2010 one child in the study
died. Everyone knew this was likely to happen, but it was not easy to accept. Several other children were
in palliative care (to reduce symptomatic discomfort during an inevitable decline). Fortunately, two other
children in the pilot test seemed to be stabilizing so well that they would soon leave the project.

This project required new funding yearly. In October 2010 the pilot families were sent another
questionnaire to fill out; in December the results were presented to Family Forum and the Project Steering
Committee. Soon after, good news came: a partner organization agreed to fund the Lead Nurse
Coordinator, Project Manager and Nurse Practitioner for a one-year continuation of the pilot project.
However, by then the Nurse Coordinator, thinking her position would terminate in March 2011, had
agreed to rejoin the cardiac care team where she previously worked. A new coordinator, Christine
Gregory, was hired. This initially created some anxiety among the families. For example, one parent’s
concern was evident in this comment: “You develop a bond, you develop trust, you become willing to
divulge information to that person. [the previous coordinator] knew our child really, really well.”

After a few months on the job the new nurse coordinator was able to earn families’ trust.

A Second Year: April 1, 2011 to March 31, 2012

In announcing the one-year extension to the pilot project, CEO Michel Bilodeau emphasized that at the
end of Year 2 it would be hard to justify a transition to an ongoing program unless an evaluation study
revealed that a) parents were satisfied with the Complex Care Coordination; b) it had a positive health
impact; and c) it reduced costs. Over dinner, Natasha Tatartcheff-Quesnel, Ann Marcotte, Chantal Krantz,
and Dr. Nathalie Major-Cook discussed the challenge of meeting these expectations. Krantz stated:
“Families can make heartfelt presentations, but that’s only part of the story.

Tatartcheff-Quesnel articulated what they all knew: “We need research-supported data in order to
persuade leadership and funders.” The pilot project data needed to point to cost savings, reduced waiting
times, and reduced utilization of expensive resources. Nathalie Major-Cook hoped cost reductions could
be demonstrated through reduced:

• Duplication (tests, medication orders, procedures)

 10

• Emergency Department visits

• Length of stay
• Events of hospitalization

Although Dr. Major-Cook believed these outcomes were likely, she expressed a concern:

“With only 23 pilot participants, the data are not very convincing. Besides, other studies say
solid evidence of cost reductions might not come for a few years. And, consider this: My reviews
found some patients had missed vaccinations and follow-ups. Those visits will look like
increased costs, even though it’s a good thing we caught them!”

Chantal Krantz was concerned about response rates: “Some parents are still so busy, they didn’t fill out
the questionnaire we sent them in October. Many also still owe me a coordination diary.” Ridha replied
that the response rate of 55% was actually a good achievement: however, she worried that some CHEO
administrators might expect an unrealistic 100% response rate.

Other members of the team highlighted positive points, such as the availability of key information on the
SPOC, which meant that patients could be assessed more promptly and efficiently. All present agreed that
they had no doubts as to the worth of Pediatric Complex Care Coordination – it was just a matter of
convincing others of this.

In February 2011 parents were invited to participate in a focus group evaluation, and at that time some of
these parents finally filled out the October 2010 questionnaire. It became clear that families who did not
enroll until fall 2010 had not yet had a lot of experience with the new coordination of care model. So, in
April 2011 at the start of the new pilot, parents were asked to fill out another questionnaire.

Also in April the Advisory Committee submitted a funding proposal for a feasibility study to learn
whether it would be possible to develop a specialized EHR just for the Coordination of Care project –
essentially digitizing the family binders.

Shaundra Ridha took a one year personal leave of absence in January of 2011. In July Chantal Krantz
moved to Vienna for two years, for family reasons. An acting director took over her project manager
duties as well as Ridha’s role. Along with partners from CCAC, CHEO, OCCA, and OCCT, the acting
director began work on a new grant proposal – this time, to turn the pilot project into an ongoing program.

In November 2011 CHEO CEO Michel Bilodeau retired. The new CEO, Alex Munter, had 20 years’
experience in health care administration, most recently as CEO of Champlain Local Health Integration
Network (LHIN), the provincial agency responsible for planning, integrating and funding health services
in that region. The Champlain LHIN annual budget of $2.25 billion supported about 200 entities
(agencies, support services, and hospitals, including CHEO).

In December Shaundra Ridha returned to her role as director of the pilot project.

On a cold Ottawa Friday afternoon in January 2012, holding a warm cup of coffee Dr. Major-Cook
contemplated the revolving door of changes in the past year. Christine Gregory had replaced the original
nurse hired for the project as Lead Care Coordinator. Chantal Krantz had taken a two-year leave.
Shaundra Ridha had left for a year but was now back, and the acting director would soon leave. Sipping
her coffee Dr. Cook considered the future of Complex Care Coordination. If the proposal that the team
had submitted was successful in securing funding, they would be able to hire personnel to expand the
program to include two Family Coordinators, administrative support, and additional pediatricians to serve
as Most Responsible Physicians, making it possible to provide an ongoing Pediatric Complex Care
Coordination service to all eligible children served by the partners.
 11

If the grant proposal was not approved, the Complex Care Coordination project would end in less than
three months.

========================================================================

Suggested Student Preparation Questions

1. What specific problems did CHEO’s Pediatric Complex Care Coordination project address?

2. If care coordination is good for technology-dependent, medically complex and fragile

children, will care coordination be good for any child? Why or why not?

3. Identify five specific arguments, based on evidence provided in the case, why the Pediatric
Complex Care Coordination service should be funded for ongoing use to serve 100 or more
technology-dependent, medically complex and fragile children in the region.

4. Identify five specific arguments, based on evidence provided in the case, why the Pediatric
Complex Care Coordination service should NOT be funded for ongoing use to 100 or more
technology-dependent, medically complex and fragile children in the region.

5. The original project proposal specified that an electronic health record would play an
important role in this pilot test, but the CIO could not deliver an EHR, so the team developed
SPOC instead. What are the implications of this change from plan?

6. If Dr. Major-Cook discovers that the proposal to fund an ongoing Pediatric Complex Care
Coordination service was rejected, what actions should she and the Lead Care Coordinator
(Chris Gregory) take before March 31, 2012, when the pilot test is scheduled to end?

7. If the proposal is approved, what needs to be done before April 1, 2012 in order to offer this
service to 100+ technology-dependent, medically complex and fragile children in the region?

REFERENCES

Achieving & Measuring Success: A National Agenda for Children with Special Health Care Needs,
Health Resources and Service Administration, last accessed by authors on August 29th
2015http://www.mchb.hrsa.gov/programs/specialneeds/achievingsuccess.html .

American Academy of Pediatrics, Committee on Children with Disabilities. Care Coordination: Integra-
ting Health and Related Systems of Care for Children with Special Health Care Needs. Pediatrics
104: 978– 981, 1999.

American Academy of Pediatrics, Committee on Children with Disabilities. Managed Care and Children
with Special Health Care Needs: A Subject Review. Pediatrics 102: 657– 660, 1998.

American Academy of Pediatrics, Committee on Community Health Services. The Pediatrician’s Role in
Community Pediatrics. Pediatrics 103 :1304– 1306, 1999.

Anderson R.L., Lyons J.S., Giles D.M., Price J.A., Estle, G. Reliability of the Child and Adolescent
Needs and Strengths-Mental Health (CANS-MH) Scale. Journal of Child and Family Studies,
12(3), 279-289, 2003.
 12

Wagner E.H, Davis C., Shaefer J., Von Korff M., Austin B.A. Survey of Leading Chronic Disease
Management Programs: Are They Consistent with the Literature? Managed Care Quarterly 7(3): 56-
66, Summer 1999.

ACKNOWLEDGEMENTS

We are grateful to the Partnership, including Champlain Community Care Access Center (CCAC),
Children’s Hospital of Eastern Ontario (CHEO), Ottawa Children’s Coordination Access (OCCA),
Ottawa Children’s Treatment Center (OCTC) and all the people involved and named in this teaching
case. Moreover, we would like to thank the families of children with complex care needs who were
involved in the Pilot Project (kept anonymous here), many of whom made themselves available to
tell us about their experience with the Pilot Project.

This study was funded by the Service Delivery Organization (SDO) of the UK National Institute for
Health Research (NIHR) [SDO project 09/1809/1075].
 13

Exhibit 1. SPOC
 14

Exhibit 2. Comparison of US and Canadian Electronic Medical Records Adoption

In 2007 the Health Information Management Systems Society (HIMSS) EMR Adoption Model was developed in
to support hospitals benchmarking their level of EMR adoption as compared with other hospitals, based on
seven stages (where Stage 0 represents minimal EMR adoption and Stage 7 denotes a fully paperless
electronic medical records environment). The following table compares 641 Canadian hospitals versus 5299
US hospitals in 2011. (Source:www.himssanalytics.org/stagesGraph.asp )

US Canada
Stage Cumulative Capabilities
2011 2011
Complete EMR. The hospital no longer uses paper charts to deliver and manage
Stage 7 patient care and has a mixture of discrete data, document images, and medical
images within its EMR environment. Clinical information can be readily shared 1.1 0.0
via standardized electronic transactions (CCD) with all entities that are authorized
to treat the patient, or a health information exchange. Hospital demonstrates
summary data continuity for all hospital services (inpatient, outpatient, ED and
ambulatory clinics)
Stage 6 Full physician documentation, with structured templates on at least one inpatient
service for progress notes, consult notes, discharge summaries or problem list and 4.4 0.5
diagnosis list maintenance. Level 3 CDS provides variance & compliance alerts. ,
Fully implemented R-PACS system displaces all film-based images. Cardiology
PACS and document imaging are scored with extra points.
Stage 5 Closed loop medication administration, with bar coded unit dose medications
environment and bar coding or other automated identification technology, 7.1 0.2
integrated with CPOE and pharmacy to ensure “five rights” of medication
administration are verified at bedside.
Stage 4 Computerized Practitioner Order Entry (CPOE) is implemented on at least one
inpatient unit, along with second level CDS (supporting evidence-based clinical 13.2 2.3
protocols).
Stage 3 Nursing/clinical documentation (Flow sheets) and Electronic Medication
Administration Record (EMAR) application is required and is integrated with the 46.1 34.5
CDR for at least one inpatient service in the hospital. First level of clinical
decision support (CDS) system is implemented for drug/drug, drug/food, and other
error checking, Picture Archive and Communication System (PACS)is available
online to physicians outside the Radiology department.

Percent at Stage 3 or Above 71.9% 37.5%

Stage 2 Ancillary clinical systems feed data to a Clinical Data Repository (CDR) that
provides physician access for reviewing all orders and results. The CDR uses a 12.6 22.0
Controlled Medical Vocabulary, and a Clinical Decision Support (CDS) engine.
Document Imaging may be linked to CDR and hospital may be Health
Information Exchange(HIE) capable.
Stage 1 All 3 ancillary systems (Lab, Radiology, Pharmacy)are installed 5.9 14.4

Stage 0 All 3 ancillary department systems (Lab, Rad, Pharm) not installed 9.6 26.2

N= 5299 641
 15

Exhibit 3. Roadmap of the Pilot Project - Family Perspective

 16

Exhibit 4. Method for Selecting Pilot Participants

 17

Exhibit 5.Pilot Project Governance Structure

 18

Exhibit 6. Roadmap of the Pilot Project - Family Perspective

View publication stats