A.
Background and Significance
Introduction – Rush University Medical Center (RUMC), located in Chicago, Illinois,
proposes a health IT research project that will demonstrate positive patient outcomes and
increased efficiency in outreach healthcare delivery for chronic refractory epilepsy and
associated psychiatric co-morbidities. The model will be applied to patients in underserved rural
areas who do not have local access to tertiary care specialists located in urban-based medical
centers. This project addresses Research Area 2: Health IT to Support Patient-Centered Care.
The proposed model has multiple innovative components, namely:
(1) Community-based and patient-centered population health management (PHM) provided
by a local coordination center located in a rural community. The coordination center
leverages knowledge of local resources used for patient referrals.
(2) Coordination of ambulatory care across the traditionally-isolated medical, mental health,
and social service domains, minimizing usage of healthcare services such as emergency
department visits.
(3) Remote access to an epilepsy neurology specialist in a large urban medical center.
(4) “On-demand” patient education.
These four components are each enabled by new contributions to health IT-enabled patientcentered care coordination, including videoconferencing-based telemedicine, a custom regional
map-based provider database for patient referrals, real-time scheduling with community
resources, and finally, an open common license animation-intensive distance learning video
archive.
Significance – Epilepsy is the fourth most common neurological disorder in the United
States, affecting nearly three million Americans (1% of the population). An estimated 600,000 of
these individuals are diagnosed with intractable epilepsy that is not responsive to medical
therapies. This condition is known as refractory epilepsy and is defined here as failing to
become seizure-free on adequate trials and maximum tolerated doses of two appropriate antiepileptic medications (Berg et al., 2006; Kwan et al., 2010; Brodie, 2013). Furthermore, 30-70%
of refractory epilepsy patients suffer from co-morbid mood disorders (Kanner, 2003; Kanner &
Balabanov, 2008; Kanner et al., 2010). As a disease state comparison, this group outnumbers
the prevalence of those in the U.S. with multiple sclerosis, new-onset stroke, and Parkinson’s
disease.
The impact of refractory epilepsy on healthcare utilization was highlighted in a recent
study (Manjunath et al., 2012) which identified the burden of uncontrolled epilepsy on patients
seen in emergency departments. In this study, uncontrolled epilepsy cohorts presented to the
emergency department about two times more frequently with head injuries than the wellcontrolled epilepsy group. Furthermore, Noble et al. (2012) estimated that one-fifth of patients
with epilepsy visit hospital emergency departments. Patients with uncontrolled seizures were
admitted to emergency departments with a mean of 3.2 times in the prior year (median = 2).
These patients with uncontrolled epilepsy were found to experience more anxiety, lower
knowledge about epilepsy and its management, and greater perceived epilepsy-related stigma.
Holmquist et al. (2008) extracted data for emergency department admission diagnoses
for epilepsy and convulsions and identified the top five principal diagnoses for epilepsy-related
admissions: pneumonia, stroke, mood disorders, aspiration, and sepsis. Other diagnoses
included complications related to pregnancy and rehabilitation care. The total cost for all
patients admitted for epilepsy and convulsions totaled nearly $1.8 billion in hospital costs in
2005. This financial burden will increase dramatically following full implementation of the Patient
Protection and Affordable Care Act (ACA), when 18.2 million of the estimated 48 million
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uninsured individuals (800,000 of the 1.8 million uninsured in Illinois) will acquire healthcare
coverage. Increased efficiencies in healthcare delivery are urgently needed to enable limited
resources to provide care for a large number of new patients (Buettgens et al, 2013).
Furthermore, access to the nearly 30 million individuals remaining not eligible for healthcare
coverage, but potentially eligible for some form of government assistance, must also be
addressed.
Compounding the shortage of resources is the lack of community-based subspecialty
care for refractory health conditions in rural areas, where distance becomes an additional barrier
to accessing urban-based tertiary care medical centers. A large fraction of individuals in the
U.S. with refractory epilepsy are located in rural communities (O’Grady et al., 2002; van Dis,
2002; Ownby, 2005). Furthermore, a disproportionate number of individuals in rural
communities with refractory epilepsy are underinsured and have psychiatric co-morbidities
(Kanner, 2009; Begley et al., 2011). Such disparities in this vulnerable population impact the
ability to self-manage ongoing care needs and adherence to prescribed therapies, leading to
increased utilization of emergency department visits (Davis et al., 2008; Faught et al., 2008;
2009; Manjunath et al., 2012). This disparity needs to be urgently addressed, particularly in the
efficient coordination of scarce resources, including: (1) epilepsy subspecialty medical care, (2)
complementary mental health services for refractory epilepsy patients with co-morbid mood
disorders, and (3) community-based social services to accommodate a significant portion of this
underemployed population.
To address the dual issues of limited access to resources and the need for
complementary services across care domains, RUMC proposes a scalable technology-based
approach for the near real-time coordination of psychosocial services and specialized medical
needs for individuals with chronic uncontrolled epilepsy. This patient-centered care model will
transition patients away from emergency department settings to multiple lower-cost ambulatory
settings, including rural healthcare clinics, Federally Qualified Health Centers (FQHCs), mental
health providers, and community social services. Remote telehealth access, defined as video
conferencing capability coupled with community-based coordinated care, will enable patients to
consult with a specialist at RUMC (a tertiary care facility) and local “wraparound” services.
Coordination of medical and psychosocial services will facilitate communication among
caregivers, and patient access to an online library of animation-intensive educational
information will empower patients in disease management. The coordination activities will be
conducted within an independent PHM coordination center that is located in the patients’
community. This unique and essential element of the model will implement both video-based
telemedicine and customized web-based software for coordinating and scheduling throughout
the local provider network. The local care coordination team will be able to efficiently leverage
the providers and resources that are included in this location-based referral application. It is
important to emphasize that telemedicine is not the treatment, but rather a bridge connecting
resources with the patient in near real-time. The health IT-outfitted community coordination
center is a unique feature of this model, as it activates a telemedicine bridge to efficiently
provide the on-demand wraparound services.
The goal of this model is to reduce healthcare-related costs related to rural hospital
admissions for both medical and psychiatric care to more sustainable levels while maintaining
the highest quality of care, by increasing access to care in ambulatory settings. This project will
also provide the ability of physician specialists at tertiary care centers to assume a much greater
case load if they are relieved of coordinating case management activities. Tertiary care centerbased specialists treating patients with refractory epilepsy have a limited ability and time to
connect these patients with local psychiatric and/or social services. Such coordination is
inefficient, often incomplete, and can limit the effectiveness of treating patients living in rural
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underserved communities. The proposed health IT system will move these follow-up activities
from the physician specialist to qualified community-based care coordinators, who will also
improve patient outcomes by ensuring efficient, appropriate, and coordinated access to all
needed medical care and psychosocial services.
RUMC, a Chicago-based tertiary care medical center, will implement this model in rural
McHenry County in Illinois, approximately 80 miles away. Applying national disease rates, about
3,000 individuals in McHenry County have epilepsy (approximately 1% of the county’s 308,145
residents). Approximately 40% of these individuals (1,200) are expected to have refractory
epilepsy.
RUMC is partnering with Options and Advocacy (O&A), a nonprofit social services and
advocacy organization located in McHenry County and partially funded by the county’s Mental
Health Board. O&A founded its epilepsy program in 2010, and it is currently facilitating access to
community psychosocial resources and sub-specialty medical care for about 450 individuals
with epilepsy and co-morbid developmental and mental health disabilities. These existing
functions will be greatly facilitated through the implementation of health IT, which will enable
telecommunications with the specialist at RUMC, efficient care coordination, improved referrals
and scheduling with local resources, and on-demand patient education. Implementation of
RUMC’s model will provide access to on-demand comprehensive healthcare for a treatment
(intervention) group of at least 261 children and adults with refractory epilepsy over a minimum
12-month monitoring period. This cohort will receive health IT-assisted care coordination
services that will be more efficient than the currently implemented standard-of-care referrals that
will be received by a matched control group (consisting of consultations with an on-staff
neurologist. After the study period, this project should be able to demonstrate the feasibility of
increasing O&A’s case load by 150% based on the efficiencies inherent in the health IT model.
Furthermore, by transitioning outreach care coordination from the RUMC subspecialty physician
to O&A, the subspecialist’s patient case load capacity for outreach care should increase by a
similar 150%.
O&A will serve as the patient-centered PHM coordination center located in the
community under study (McHenry County, IL). RUMC and O&A have implemented beta
versions of the proposed telehealth technology and are beginning to populate the provider
network database tool for referrals and scheduling. The focus of the proposed work is to
implement the services and collect data on the outcomes in order to inform future design
modifications and scalability. The goal is to demonstrate that an efficient use of resources will
enable increased patient loads for the specialist and improved outcomes for rural patients. This
pathway to rural quality healthcare will supplement regular “physical presence” clinic visits in the
community with as-needed regular remote “virtual presence” telehealth visits using portable
secure videoconferencing technology. The unique use of a community-based coordination
center will provide the ability to track medical care, psychiatric care, and social services for
individuals in the community. The center will utilize customized tracking software to maintain
contact with this vulnerable population on a regular basis.
Research Uncertainties – Patients, in particular those in rural areas, will clearly benefit
from increased access and coordinated referrals to medical, mental health, and social services.
However, the cost of coordination that will result in these improved patient outcomes is
uncertain, as is the size of the patient load that can be managed by a given team of providers
(subspecialist and coordination team). RUMC anticipates demonstrating that the cost of
coordination will be more than offset by the reduced need for emergency department visits.
Additional research uncertainties arise from patient mobility between care facilities receiving or
not receiving the proposed interventions.
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Despite these uncertainties, the value of the research results will be high. RUMC will use
the data collected in this study to evaluate the proposed model and to improve its design and
use of technology. Subsequent analyses of the collected data will contribute to the knowledge
base on care coordination enabled by health IT, including the ability to erase the boundaries
that separate the different care domains, the utility of location-based referral and scheduling
databases, and the use of telemedicine to improve patient access to tertiary care in rural areas.
Larger Scale Implementation – The goal for this project is to develop a template over a
two-year period for aligning efficient RUMC subspecialty epilepsy care, community mental
healthcare, and social services remote from the tertiary care facility (RUMC) in a rural
underserved community. This model is anticipated to be scalable for implementation throughout
the State of Illinois. Following this two-year exploratory project, the template is anticipated to be
scalable for implementation in a second rural underserved county (LaSalle, IL). Other state and
federal funding sources will be sought to scale up the proposed study following its two-year
completion as follows:
(1) Patient throughput and access to epilepsy-related healthcare resources in the targeted
community (McHenry County) will be compared with a control population cohort in a
nearby Illinois county (LaSalle) for 8-10 months in the absence of any interventions in
LaSalle County. Deployment of the McHenry template and workflow will be initiated in
LaSalle County following this observation period.
(2) Necessary personnel at a nearby LaSalle Federally Qualified Health Clinic (FQHC) will
support and contribute to success and scalability in the targeted rural population.
(3) The design and workflow of the system components will be identified for replication
between RUMC and both LaSalle and McHenry counties. Inevitably, upon refinement of
this model, it will be replicated in other rural communities and tertiary care facilities within
Illinois.
B.
Theoretical Framework
Research Question – RUMC proposes to implement and test a novel rural health ITfacilitated population health management (PHM) delivery model. The goal of this model is to
minimize local emergency department visits in an underserved Illinois community by providing a
cost-efficient outreach capability. The care model coordinates an RUMC-based epilepsy
neurology specialist and associated services with community-based resources. Such
connectivity will be dependent upon video-based telemedicine and customized web-based
technology facilitating “near real-time” networking of community resources with patient-specific
care needs. A unique feature of this health IT-rich healthcare delivery model hinges on the
utilization and scalability of an independent community-based PHM coordination center.
The goal of PHM in this context is to significantly modify morbidity patterns by reducing
health inequities or disparities among those in rural communites with refractory epilepsy. The
proposed PHM outreach delivery model employs a novel cost-efficient portable
videoconferencing-based telehealth system. The connectivity-intensive outreach management
mechanism, managed by the PHM coordination center, will challenge the current standard-ofcare approach to evaluating and following patients in rural communities. This technology will be
used to enable interactions between remote rural patients and an RUMC-based provider. The
web-based provider network and resource system will support psychosocial service
coordination. The HIPAA-compliant provider network system will be centralized within the
coordination center and operated by O&A care coordinators who will match near real-time or
“on-demand” epilepsy-related medical care, mental healthcare, and social service resources.
The outreach healthcare team, as established currently, includes the RUMC subspecialist
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physician (Principal Investigator), nurse clinician, direct service coordinator, social services
coordinator, and dedicated Spanish interpreter.
RUMC hypothesizes that, following patient discharge from a rural medium-sized
emergency department, the community-based PHM coordination center (provided in McHenry
County by O&A) facilitated by on-demand telehealth will minimize a recurrence of emergency
department visits compared to standard-of-care approaches. The technology-intensive model
will overcome barriers preventing this type of coordinated care from being implemented to date.
The two research questions to be investigated are the following:
(1) Can video-based telehealth (defined as video-conferencing-based consultations plus
coordination of wraparound services) minimize return visits by patients with refractory
epilepsy to a rural medium-sized medical center emergency department setting
compared to standard-of-care practices, and to what extent?
(2) Will the proposed proprietary provider network and scheduling technology facilitate
coordination of ambulatory epilepsy-related healthcare needs and patient connections
with community resources (e.g., general medical providers, mental health therapists,
shelters, clergy, and crisis services), to the extent that a significant increase in client load
is possible (e.g., 150% increase in patient load for comparable resources).
Conceptual Framework – Telehealth is defined by the Centers for Medicare & Medicaid
Services (CMS) as the use or provision of clinical services to patients by practitioners from a
distance via electronic communication technologies. This is a broader definition than that of
telemedicine, which is defined by the American Telemedicine Association as the use of medical
information exchanged from one site to another via electronic communications to improve
patients’ health status. The Joint Commission considers telemedicine as a subcategory of
telehealth. Telehealth is used as a broader umbrella term which infers that electronic
information and telecommunications technologies are used to support long-distance clinical
healthcare, patient and professional health-related education, public health, and health
administration. Several states, including California and Illinois, consider telehealth as a mode of
delivering healthcare services and public health via information and communication
technologies to facilitate the diagnosis, consultation, treatment, education, care management,
and self-management of a patient’s healthcare. Technologies to accomplish this goal include
videoconferencing, internet connectivity, “store-and-forward” imaging (such as used by
radiologists to view studies remotely), and streaming media.
Telehealth in the U.S. is only recently becoming practical due to lowered technology
costs. Telehealth adds a new paradigm in U.S. healthcare in which the patient is monitored
between physician office visits. Initiatives are generating data demonstrating the utility of
telehealth benefiting patients in underserved areas by overcoming distance barriers and the lack
of local specialists to deliver services. For example, in 2003, the University of Arkansas for
Medical Sciences implemented a telehealth program to enhance access to care for high-risk
pregnant women living in rural areas. This program reduced the state's 60-day infant mortality
rate by 0.5 percent by increasing the number of low birth weight infants delivered at a medical
center (Bronstein et al, 2012). Another successful example is the Alaska Federal Health Care
Access Network (AFHCAN) (Hoanca, 2007). This extensive telehelath initiative connects
approximately 180 Alaska Native community village clinics, 25 sub-regional clinics, 4 multiphysician health centers, 6 regional hospitals, and the Alaska Native Medical Center in
Anchorage. More than 3,000 providers have engaged in 160,000 telehealth clinical
consultations since 2001. It is estimated that in 2012, the AFHCAN telehealth program saved
the state of Alaska $8.5 million in travel costs for Medicaid patients alone.
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However, insufficient coordination of telehealth services has been demonstrated to limit
its utilization as well. For example, Canada has one of the most sophisticated telemedicine
infrastructures in the world. Published data demonstrate that 79.5% of Canadian physicians had
access to videoconferencing equipment, and 61.5% voiced a need for clinical telehealth.
Canadian telemedicine has mainly been used for educational purposes. Although feasibility of
epilepsy care through telemedicine is established, its use by practicing neurologists is
underutilized (Ahmed et al., 2008; 2010). The main perceived obstacles in the use of
telemedicine in Canada are a lack of infrastructure support and remuneration problems followed
by limitations in clinical examination (Ahmed et al., 2010).
Telehealth may be increasingly used in emergency departments throughout the U.S.,
depending on the outcomes of various studies. An ongoing project in California will determine
whether telemedicine can decrease patients’ wait times, while other studies suggest that the
use of telemedicine can improve outcomes for pediatric patients. The American Academy of
Pediatrics (AAP) has also suggested that the use of telemedicine in emergency departments
may prevent transfers of children physically present in facilities where staff are
uncomfortable with or inexperienced in caring for children. As of mid-2013, more than 15 U.S.
hospitals provide pediatric telemedicine consultations to patients at remote, rural, or
underserved emergency departments. The patient, parent, and referring physician are all
present for the audio and video interaction with the off-site pediatric specialist. The AAP
referenced two studies (Heath et al., 2009; Dharmar et al., 2013) that demonstrated higher
quality of care outcomes, based on process measures and lower medication error rates, for
telemedicine consultations as opposed to phone consultations. The AAP also reported that the
use of portable camera-equipped devices was more cost-effective than larger
videoconferencing systems.
Telehealth as an integral component of PHM can potentially facilitate both prospective
monitoring and effective interventions to efficiently address patients with refractory epilepsy and
co-morbid mood disorders. PHM is currently in its infancy, and it is not clear whether PHM
initiatives can reliably deliver better health outcomes. Researchers have not yet identified a set
of effective methods for improving the health of whole populations, short of community-wide
public health campaigns. This observation suggests that when large organizations choose to
pursue a PHM initiative, close monitoring and evaluation will be critical to guide its evolution
over time to maximize favorable outcomes.
C.
Research Design and Methods
Components of System
The health IT implementation has the following four components and use plans:
(1)
Patient-centered population health management (PHM) coordination center
PHM as applied here can facilitate the ability of healthcare providers to assess the
population of a community with refractory epilepsy, and enable them to understand the range of
patient stability levels. Individuals who have unstable or chronic uncontrolled epilepsy would
benefit from the elimination of care gaps in order to prevent further complications, as well as
from an improvement in health behaviors. Health IT can be used to assess these patients and to
target patient-specific interventions. The proposed involvement of a community medical and
psychosocial coordination center (O&A) enables a more efficient and effective way to practice
PHM. The incorporation of health IT allows the coordination center to perform much of the
routine yet time- and labor-intensive work in the background, and frees the healthcare providers
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to spend more time providing high quality care. This increases the number of patients who can
be treated with limited medical resources.
As the coordination center, O&A will integrate the health IT implementation and provide
multiple “categories of operation” for improving the coordination of care for individuals with
refractory epilepsy and co-morbid psychiatric conditions:
(a) Coordinating and facilitating “virtual presence” appointments using videoconferencing
software for communications between the patient, members of the community-based
coordination team, and the remote epilepsy subspecialist at RUMC. These
communications are described in more detail in (2) below.
(b) A customized HIPAA-compliant electronic provider database with the ability to
communicate with patients for maintaining “on-track” care (initiated by the coordination
center on a regular basis to eliminate patients falling through the cracks), as well as
schedule needed preventive and/or chronic care services. This database will enable the
coordination of near real-time appointments and access to all available regional
epilepsy-related medical and rehabilitation therapies, as well as the rapid connection of
patients with basic needs to local community resources (e.g., food and shelter, mental
healthcare). This database is described in more detail in (3) below.
(c) Patient monitoring software that will generate a summary for each patient. This summary
will help the care team identify gaps in care, better manage the patient’s unstable
epilepsy, and optimize pre- and post-visits (both “physical presence” and “virtual
presence” encounters). This software and work process will also enable the efficient
identification and organized flow of potential epilepsy surgery candidates to reach RUMC
for sophisticated interventions. Outcome measures will be reported that are designed to
follow the efficacy of intervening medical and psychosocial issues. The overall goal is to
provide the ability to view the patient population and patient-specific care gaps.
(d) Patient access to clinical knowledge of their medical conditions. This is described in
more detail in (4) below.
(2)
HIPAA-compliant portable videoconferencing communications between tertiary
care medical specialists, community-based healthcare providers, and patients
As the coordination center, O&A will manage locally deployed portable and secure
video-conferencing technology (Vidyo). Currently, the video feed protocol is capable of elevensimultaneous audio-video feeds on Wi-Fi and cellular network-enabled computer laptops and
tablets. This technology will be used for RUMC-based provider and regionally remote patient
interactions, along with psychosocial service coordinators as needed. The healthcare team will
follow patients as necessary with this video-conferencing technology, and will employ focused
home, school (e.g., pre-K to community college level), and developmental group home-based
audio-visual interactions, bringing the technology to the patient as needed.
(3)
A database for accessing and tracking all community-based resources, accessed
by web-based networking
A HIPAA-compliant database technology developed in-house by the PI is currently being
field tested for use within community-based point-of-care access. In this project, the software
will be refined as necessary to coordinate and track “on-demand” RUMC-based specialized
medical needs and community-based psychosocial resources. The main features of this
technology include the following:
(a) HIPAA-compliant protected health information (PHI) web-based user interface.
(b) Relational patient database module accessible to the O&A coordination center and the
epilepsy neurologist. This component will not interface directly with the electronic
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medical record (EMR) system at either the Centegra Healthcare System (a participant in
this project) or RUMC. The HIPAA-compliant PHI module will be utilized solely for
organizing care and tracking the patient visits. Only the O&A coordinators designated in
this proposal, the PI, and RUMC-based statisticians will have access to the database.
(c) Healthcare provider and community resources database with the capability of locating
providers in proximity to the patient’s place of residence using a Google map interface.
(d) Independent community provider appointment calendar that displays available
appointments and enables on-demand access to community resources. The web-based
scheduling software will be deployed at collaborating community provider and medical
and psychosocial resource sites. These entities will be obligated to regularly update
available appointment time slots. The O&A manager will educate and maintain regular
contact with these sites to ensure continuity of timely services as necessary for patients.
(e) Clinic video-visit and animation-intensive distance learning archive which is accessible to
patients using any Internet-connected device.
(4)
An Internet-based on-demand patient education series
This component will include customized media-based patient education of alternative
and integrative medicine therapies (e.g., in-home ketogenic diet teaching as a supplement to
medical therapies, video conferencing-based yoga sessions for stabilizing debilitating stress).
The Principal Investigator (PI) is currently developing computer-intensive production, ondemand streaming, and archiving of an animated education series targeting chronic epilepsy
and mental health to the internet at-large (see http://www.synapticom.net/videos/).
Such on-demand access to a regularly growing library of media-rich entertaining
educational material will expand and enhance RUMC’s outreach mission. This technologyintensive PHM-based delivery model will significantly enhance access to educational
information at a remote tertiary care medical center to an underserved region for specialized
healthcare.
Unintended Consequences of Telehealth Design – Although several studies have
demonstrated a positive impact from the use of telehealth and remote patient monitoring, there
are dissenting studies. A U.S. study of 205 elderly patients with a high risk of hospitalization
showed a significant increase in the mortality rate over 12 months, with rates over 12 months for
the telemonitoring group at 14.7%, compared with 3.9% for the usual care group (Takahashi et
al., 2012). No reason for this increased rate was determined, although a possible mechanism
was that patients who were remotely monitored were subjected to additional medical tests. It is
anticipated that adverse effects will be very unlikely, since the proposed intervention increases
care coordination and is not meant to substitute telemedicine for regular visits.
Study Design and Analytical Plan
The feasibility of this model will be tested in McHenry County, IL, with an underserved
rural population of approximately 308,000. By the end of the project period, implementation of
this novel model will provide access to on-demand comprehensive healthcare for approximately
700 children and adults with refractory epilepsy, of which a significant fraction are diagnosed
with associated psychiatric and developmental co-morbidities. As a comparison, over the last
three years (since 2010), O&A has established services for nearly 450 insured and non-insured
patients with epilepsy.
Two separate McHenry County campuses of the Centegra Healthcare System will be
involved in this study. In fiscal years 2011 and 2012, each Centegra emergency department
campuses treated approximately 1,000 children and adults with billing diagnoses of epilepsy
and seizures/spells (the diagnosis of syncope was excluded from these figures). The numbers
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of patients seen in each of the two Centegra emergency departments also reflect return visits
for individual patients. These hospital statistics approximate the anticipated number of McHenry
County patients with uncontrolled epilepsy. The hospital statistics also include patients with
psychogenic spells, as between 30-60% of these patients also have epileptic seizures. The
proposed study will track all patients with diagnoses of refractory epilepsy who present at either
Centegra hospital emergency department, and will study their transition to local ambulatory
follow-up care.
One of the McHenry campuses will be used as the intervention site, and the second as a
reference (control) site during the entire study period (21 months after a 3-month ramp up
period). At both the intervention and reference sites, patients who are enrolled in the study will
have a baseline of follow-up care established based on an examination of their prior 8 months
medical care history. This history will examine emergency department visits and access to subspecialty care, mental healthcare, and social resources. The O&A coordinators will facilitate
enrolled patients completing release of information forms which will provide access to the
patient’s medical history. This baseline will be used for matched comparison to the subsequent
implementation period at both sites. Baseline quality outcome measures will be recorded.
During the intervention, observation and patient tracking based on patient-specific
emergency department use behavior will be compared between the intervention group receiving
health IT-assisted follow-up care by O&A, and the reference group receiving standard-of-care
referral services (including referrals to surgical treatment at RUMC when indicated). A portable
video-conferencing telemedicine link will connect the epilepsy subspecialist from RUMC (about
80 miles away) to both the intervention and reference Centegra campuses. Thus, both
campuses will benefit from telemedicine-related encounters for seizure-related neurology
consultation. However, at the reference campus, the Centegra discharge planning system for
referring patients to local neurologists and ambulatory services for “standard-of-care” epilepsy
follow-up will be used, instead of the O&A coordination center outfitted with health IT
connectivity to wraparound services. Using telemedicine alone (in the absence of deploying
local care coordination) in the reference emergency department frames one of the primary goals
of the study. Specifically, a tertiary care facility (RUMC) working collaboratively with a remote
community-based medical and psychosocial services coordination center (facilitated by
telemedicine) will maximize stabilization of refractory epilepsy. In other words, telemedicine
alone is not a treatment modality. Rather, it is utilized as a bridge to connect external resources
to the remote emergency department to assist in the transition to ambulatory care.
Specific Aims – The proposed project has two specific aims:
(1) Complete deployment of the health IT intervention involving the O&A coordination center
and technology installation at Centegra Health System and local service providers.
(2) Track and manage patients with refractory epilepsy in McHenry County in their transition
to ambulatory care with and without the O&A care coordination intervention. Assess any
differences in patient outcomes, return visits to the emergency department, and
efficiency in connecting patients with community resources. In addition, ascertain the
provider, patient, and caregiver satisfaction and perceived quality of care.
Experimental Design – A quasi-experimental design study is proposed that identifies
an intervention and control group of patients, as it is not feasible to employ a randomized design
in this exploratory investigation. The intervention cohort will be those epilepsy patients seen at
one campus of the Centegra Health System, and the control cohort will be patients seen at a
second campus of the Centegra Health System. Both campuses are located in McHenry County
in areas with similar demographics (Woodstock and Crystal Lake, IL). A paired analysis of
variance will be utilized to study patients in both emergency departments.
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Assuming a 0.1 significance (p-value) and a 0.8 power level, a total of 650 patients will
be required for the study, with 325 patients in the treatment group (Centegra campus 1) and 325
in the control group (Centegra campus 2). A two-sided hypothesis is used, since it is not
assumed in advance that the use of the health IT intervention will improve the management of
refractory epilepsy. This sample size is anticipated to enable a 10-15% difference to be detected
between the two cohorts.
In addition, a cross-sectional analysis will be performed using the Centegra Emergency
Department (McHenry County) electronic medical record (EMR) database, which provides
information on all emergency department visits and hospital discharges. Billing diagnoses of
epilepsy, and seizures will be used to search the database. Health resource information and
socioeconomic data for the patients will also be included. A two-level hierarchical logistic
regression model will be used to determine the probability that an individual would receive a
referral for a neurologist specializing in the treatment of epilepsy or for psychosocial services.
Individual-level predictors will include insurance status, age, ethnicity, gender, and comorbidities. County-level predictors will include access to a comprehensive epilepsy center and
social and economic characteristics.
Target Population – The feasibility of this model will be tested in rural McHenry County
on children ages 5-17 and adults 18 and older with refractory epilepsy. It is estimated that 3070% of these individuals are diagnosed with associated psychiatric and developmental comorbidities. These patients will present to the Centegra Healthcare System Emergency
Department.
Recruitment – All patients with refractory epilepsy in the presence or absence of clearcut co-morbid mood disorders will be followed. The two O&A project coordinators (Kim Babiarz
and Nancy Monica) and nurse clinician (Robin Everson, RN, MS) will compose the adjudication
team available to the Centegra emergency department in McHenry County for any spell or
seizure-related admission. Upon signing a RUMC Institutional Review Board (IRB)-approved
consent following education provided to the patient and family, the patient’s medical history will
be accessed for the prior 8 months. O&A will also work in collaboration with the Epilepsy
Foundation of Rockford, IL and Greater Chicago to identify potential patients in the community.
In addition, social, educational, and healthcare providers will be recruited for
participation in the project. These providers will be contacted by mail, phone, and in person by
the project coordinators to distribute educational materials. The project coordinators will
furthermore provide epilepsy in-service/educational events at these locations. Recruitment will
occur at county schools, group homes, emergency departments, senior facilities, social service
agencies, health departments, transitional living facilities, day care facilities, support groups,
workshops serving the disabled, food pantries/township offices, intermediate care facilities
(developmental disability and mentally impaired), local pre-admission screening agents,
community college, shelters, mental health providers, and Federally Qualified Health Clinics.
Follow up would be completed every 30 days to keep lines of communication/referrals open.
The recruitment activities will identify the providers, the geographic area they cover in
the target community (McHenry County), and the scope of their services. These providers will
be included in the customized web-based provider and scheduling database developed by the
PI and RUMC.
Selection/Assignment – All epilepsy patients age 5 and over entering the emergency
department (ED) of both Centegra campuses will be eligible for enrollment in this study. The
adjudication team will consist of two English-speaking O&A coordinators. In addition, the
Spanish interpreter will offer the study to Spanish-speaking patients and families/caregivers.
Each coordinator will educate the emergency personnel at both campuses regarding accessing
- 10 -
the on-call subspecialist physician for beginning and completing a telehealth consult. The
coordinators will transcribe the encounters in the ED, either in real time or the following day
using a HIPAA-compliant video recording of the session conducted at the originating Centegra
site. Patients or their guardians if under 18 must consent to participate by completing HIPAAcompliance, telehealth, and voluntary participation consent forms. The RUMC Institutional
Review Board will review and approve the consent procedure. Enrolled patients will be followed
for return emergency department visits within the first 30 days, 31-90 days, 91-180 days, 181240 days, 241-300 days, and 301-360 days.
Data Collection – The following quantities will be collected from both the intervention
and control cohorts:
(1)
patient demographics
(2)
primary diagnoses
(3)
insurance status with any potential need for facilitating acquisition of healthcare
coverage
(4)
time to healthcare coverage and obstacles to obtaining healthcare insurance
(5)
patient assistance status for medications, as well as time to acquire therapies
(medications, devices, surgery)
(6)
number and reasons for any healthcare denials for the underinsured
(7)
current and past anti-epileptic medications
(8)
current and past psychotropic medications
(9)
medication allergies
(10) seizure type/syndrome
(11) current or anticipated surgery/vagus nerve simulation (VNS) candidate status
(12) seizure frequency prior to and following implementation of treatment
(13) tracking self-completed mood surveys for identifying individuals at risk for psychiatric
co-morbidities
(14) tracking psychiatric follow up care
(15) emergency department visits
(16) time to be seen in the emergency department
(17) number of video visits and physical presence visits with the subspecialist (tertiary
care) physician
Data Analysis – A paired means analysis of variance will be used to compare the two
Centegra emergency departments (corresponding to the intervention cohort and control cohort).
Patients at one emergency department (intervention cohort) will receive both telemedicine
services and the health IT-enabled coordinated care and wrap around services. Patients at the
second emergency department (control cohort) will receive telemedicine services combined with
standard-of-care referrals. Both groups will have an 8-month baseline established from prior
medical records.
The descriptive metrics listed above will be collected during the course of this study to
evaluate the usefulness of the HIPAA-compliant portable videoconferencing communications
between the tertiary care subspecialist physician, community-based hospital emergency
departments, and patients as they transition to ambulatory care. These metrics will be added to
the web-based database for accessing and tracking all community-based resources, and will be
used in both a primary and secondary analysis.
Evaluation and Outcomes
RUMC will implement the proposed model over the two-year study period with the goal
of understanding the effect of its implementation on healthcare utilization for refractory epilepsy.
It is hypothesized that this model will reduce dependence on emergency department care,
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increase care provided through ambulatory physical health and psychosocial resources, and
improve patient education and self-management. RUMC has the objective to reduce return
visits to emergency departments by 15-20% over a patient monitoring period of at least 12
months, compared to an 8-month baseline period and in comparison to emergency department
visits from the control campus cohort.
As a secondary hypothesis, RUMC anticipates that the proposed methodology will
increase regional outreach specialty provider-to-patient ratios in McHenry County by 150% over
the two-year project period. This increased efficiency will arise from the proposed provider
network and scheduling technology that facilitates connections between patients and community
resources (e.g., general medical providers, mental health therapists, shelters, clergy, and crisis
services).
To evaluate this project, RUMC will track implementation outcomes, system-level
process outcomes, and clinical outcomes. Implementation outcomes will be assessed during a
formative evaluation during the course of the project. The formative evaluation will assess the
quality of the implementation and progress in meeting project goals, identify the extent to which
the health IT model is contributing to this progress, and systematically attempt to assess
unanticipated benefits and obstacles. The formative evaluation will be performed on a quarterly
basis in order to identify potential issues early during the program so that necessary steps can
be taken to correct them. The implementation outcomes to be assessed include the following:
 The number of patients enrolled, tracked, and managed through the coordination
center
 The number of patients using telehealth technology for remote access to
subspecialty (tertiary care) providers
 The number of community resource providers participating in the resource and
scheduling database within McHenry County
 The number of patients connected to local services using the database
 The number of patients using the customized IT-based scheduling tool
 Work flow changes that demonstrate increased individual patient use of local
services, decreased individual patient use of emergency departments, and efficient
access and use of tertiary care resources
 The number of patients accessing online medical education materials
 Patient and provider acceptance of and satisfaction with the health IT model
The AHRQ-funded Consumer Assessment of Healthcare Providers and Systems
(CAHPS®) Clinician & Group Survey (https://cahps.ahrq.gov) will be used to assess patient
satisfaction for all subjects participating in the proposed project. CAHPS is a standardized
survey for assessing perceptions of care and accessibility of services from individual clinicians
and from group practices. In addition, feedback on the telehealth experience will be obtained
from patients using the TeleHealth Patient Satisfaction Survey instrument (Utah Telehealth
Network, http://www.utahtelehealth.net). Patient interaction with the health IT intervention will
primarily be through the telehealth video conferencing component. The design of this
component was based on patient group campaigns in support of policy changes to incorporate
telemedicine into practice. These patient groups include the Parkinson’s Action Network and the
National Heart and Stroke Association.
Provider acceptance and satisfaction will be ascertained using a variety of instruments
designed to solicit feedback on quality of care, new workflow processes, and the integration of
health IT, such as the System and Use Assessment Survey (Canada Health Infoway,
https://www.infoway-inforoute.com), the Clinical Information System Implementation Evaluation
Scale (http://cisevaluation.com/Home_Page.html), the TAMC Chronic Care Technology Project
- 12 -
survey (The Aroostook Medical Center), and a previously validated 7-point implicit quality review
tool (Dharmar et al., 2013).
In addition to implementation outcomes, system-level process outcomes will be
evaluated to assess healthcare utilization trends, including evidence of increased client load
handled by regional outreach specialty providers. In addition, utilization trends for treating
patients with medically refractory epilepsy will be examined at the tertiary care medical center
(RUMC) and community medical centers in McHenry County (Centegra Medical Center). The
focus will be on returns to the emergency department, transitions to ambulatory care, and
remote and in-person visits with an RUMC subspecialist physician. The proposed outreach
delivery model will provide a proof-of-concept for an increase in the productivity of RUMC, as
well as the community-based coordination center (O&A). Both providers will accommodate an
increased number of insured individuals requiring efficient and ongoing access to local
community psychiatric and social resources, epilepsy-specialty expertise, and patient-specific
media-rich education.
Clinical outcomes will be a key focus of the summative assessment. These include
decreased return visits to an emergency department, increased access to regional specialized
medical and psychiatric services as needed (both physical presence and virtual presence), and
improved patient outcomes. These outcome measures are designed to follow the efficacy of
intervening medical and psychosocial issues adapted from the Outcomes Guidelines Report
Vol. 5 (Care Continuum Alliance, 2010). Clinical measures include:
 Psychosocial outcomes. Access to regional psychiatric services will be quantified.
Variables will include physical presence office visits, emergency department visits,
and urgent hospital admissions for psychiatric care. In addition, we will employ
validated semi-quantitative depression and anxiety screening tools (Neurological
Disorders Depression Inventory in Epilepsy [NDDI-E] (Freidman et al, 2009; Gandy
et al, 2012), and Patient Health Questionnaire-Generalized Anxiety Disorder-7 [PHQGAD-7] (Brandt et al, 2010; Kanner, 2011) administered in the emergency
department at all encounters and at designated 60-day intervals throughout the trial,
including at each virtual and physical presence visits.
 Behavior change. Utilization encounters of emergency department and ambulatory
services for each patient will be tracked.
 Clinical and health status. Access to regional specialized medical services will be
quantified. Variables will include physical presence office visits and emergency
department visits for seizure-related care. The number of individuals transitioned
from an emergency department as well as health maintenance behavior of individual
patients will be followed.
Data collection will be technology-based. For instance, data will be available from the
video-conferencing technology used for interactions between the RUMC-based provider, rural
patients, and psychosocial service coordinators as needed. These data will be extracted from
the audit/log files generated by the online portal system. The types of information gathered will
include online communications between patient and practitioner or between different
practitioners, and the system of communication access by a practitioner or a patient. Other data
will be accessed from emergency department records, such as personal medical history, lab
results, current medications, treatment plans, and evidence-based recommendations.
A cross-sectional analysis will be performed using the Centegra Emergency Department
(McHenry County) electronic medical record (EMR) database which provides information on all
emergency department visits and hospital discharges. Billing diagnoses of epilepsy, and
seizures will be used to search this database. Health resource information and socioeconomic
data for the patients will also be included. A two-level hierarchical logistic regression model will
- 13 -
be used to determine the probability that an individual would receive a referral for an epilepsy
neurologist or psychosocial services. Individual-level predictors included insurance status, age,
ethnicity, gender, and co-morbidities. County-level predictors will include access to a
comprehensive epilepsy center and social and economic characteristics.
RUMC and O&A will form a project Advisory Committee composed of at least one
person in each of the following areas: individual with epilepsy and/or caregiver, industry
representative, Centegra representative, O&A representative, Epilepsy Foundation of Greater
Rockford representative, and RUMC representative from within the Rush Epilepsy Center. This
committee will meet quarterly to discuss progress, obstacles, and solutions to achieve the
activities outlined by the project. This committee will meet quarterly to discuss progress and
provide guidance for the project. Project personnel will prepare quarterly formative evaluations
for review by the Advisory Committee. In addition, an evaluator from RUMC (external to the
project) will conduct the formative and summative evaluation as well as evaluate the research
project. The formative evaluation will examine the ongoing implementation and system-level
performance measures and will provide information to the project staff that will be useful in
gauging the project’s progress and in identifying areas for improvement. The summative
evaluation will examine both the success of the health IT model implementation and the
achievement of clinical outcomes.
Plan for Privacy and Security Protections in the Development and Implementation of
Health IT System
RUMC will implement a Privacy and Security Protections Plan to ensure that all patient
information is protected. The patient and provider database web-based application employs
HIPAA-compliant PHI database technology to coordinate and track “on-demand” RUMC-based
specialized medical needs and community-based psychosocial resources. HIPAA-compliance
utilizes audit capability, user authentication, and access control. The telehealth vendor (Vidyo)
uses AES-128 media encryption and HTTPS signaling encryption, FIPS140-2 certification,
guest link control, auto and manual locking virtual rooms, and “knock on the door” functionality.
The proposed project will meet all HIPAA privacy and security requirements, gain patient
consent for participation in the project, and comply with risk management policies and
procedures. These include: (1) patient consent for the release of patient information, (2)
measurement strategies to monitor quality indicators, evaluate effectiveness of staff
participation in mandatory education, trend performance improvement, and adherence to
performance standards, (3) risk reduction strategies, such as simplification, fail safe design, and
redundancy issues, and (4) process review of any adverse unexpected occurrence (or risk of
occurrence) involving death, serious physical injury, or serious psychological injury. Additional
policies and procedures will be developed as needed to meet risk management requirements
for the project.
Additional standards for security and functionality are provided by the Certification
Commission for Healthcare Information Technology (CCHIT). The security requirements
specified by CCHIT that are met by RUMC’s community psychosocial services provider
networking database include: (1) the ability to have authorized administrators grant or remove
restrictions or privileges to users and groups, (2) the ability to log information and perform
audits, (3) the use of passwords and user authentication, and (3) the use of encryption,
specifically SSL and HTML over HTTPS.
D.
Health IT Intervention
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The health information technologies will have three major components already
developed: (1) an open-source patient and provider web-based database, (2) the video-based
telehealth system, and (3) the animated patient education series. The patient and provider
database was built using an open source software development kit (SDK), as provided by the
Alpha V Software platform. This platform will not be integrated with the existing EMR located at
RUMC (Epic). However, it will complement the RUMC-based EMR and will maintain HIPAAcompliance. This health IT technology conforms to federal interoperability standards and uses
certified technology.
The video-based telehealth system, Vidyo, is provided by IDSolutions (IDS). This system
has the following components:
(1) VidyoPortal: This device provides management and connection capabilities for both
administrators and end users.
(2) VidyoRouter: This includes a VidyoLine license for high-definition videoconferencing
enabling conference capability for up to 11 desktop and mobile connections. Each
VidyoRouter has a participant capacity of 100 connections with encryption deployed. In
addition, this device allows the added Firewall Traversal functionality which enables
users to communicate from the greatest variety of networks.
(3) Vidyo Secured VidyoConferencing Option: IDS has implemented the highest level of
standards-based embedded AES 128 bit encryption in this product that meet HIPAA
compliance for patient confidentiality regardless of network type. This solution uses AES
128 bit as the encryption scheme, which is the Federal encryption scheme of choice for
all data transfer including U.S. Government Top Secret (FIPS 197). To date, AES 128 bit
encryption has been widely accepted by the healthcare industry as being HIPAA
compliant.
The media server and archive system used for clinic video visits will be located at RUMC
in the PI’s secure computer processing laboratory. Clinic video visit sessions and animationintensive distance learning media files will be stored on a 40 terabyte hard drive RAID system.
Development of the animated video series emphasizing epilepsy and mental health will take
place in the same computer laboratory.
E.
Software, Hardware, and/or Equipment Purchases
The health IT model to be deployed and tested in the proposed project is nearing
completion and will be available for implementation upon award. No funds are requested for
technology purposes.
F.
Personnel
The healthcare team will include the subspecialist physician (Principal Investigator),
nurse clinician, direct service coordinator, social services coordinator, and dedicated Spanish
interpreter. These key personnel are described here.
Principal Investigator – The PI and subspecialty physician at RUMC is Dr. Marvin A.
Rossi, MD, PhD. Dr. Rossi received his MD from Rush Medical College and his PhD in
molecular biophysics and physiology from Rush University Graduate College. He is an assistant
professor and senior attending physician at the Rush Epilepsy Center and an adjunct assistant
professor at the University of Illinois at Chicago. As PI, Dr. Rossi will spend 20% of his level of
effort (8 hours per week based on 40 hour week) devoted to this project.
Dr. Rossi’s primary clinical research objective is to contribute to the development of a
next generation epilepsy care delivery system that will complement national healthcare reform
- 15 -
efforts. Dr. Rossi defines innovative healthcare delivery as the provision of efficient and timely
access for all individuals in a community to medical care-related technologies as well as basic
needs. In 2003, Dr. Rossi co-founded an epilepsy outreach clinic located in rural McHenry
County. This thriving outreach clinic targets a diverse population of children and adults with
intractable epilepsy, including those with associated psychiatric and developmental comorbidities. In addition to psychosocial outreach services, patients receive sophisticated
diagnostic and treatment strategies based at RUMC. Tools used at RUMC include an innovative
state-of-the-art nuclear medicine epilepsy neuroimaging program established by the PI in 2001
(see http://www.synapticom.net). The clinical outreach component of this initiative has rapidly
evolving into an innovative healthcare delivery model.
Dr. Rossi has been the PI on several ongoing and completed university- and industrysponsored investigator-initiated grants. He has successfully and solely administered projects
(including intellectual property protections, grant budgets, and IRB consent generation),
collaborated with established researchers, and produced several accepted peer-reviewed
original manuscripts as well as recently published commentaries on related research in the field.
The PI has extensive multidisciplinary formal training in the basic mechanisms underlying
epilepsy and neural plasticity, and is applying this expertise toward the proposed research
initiative within the Rush Epilepsy Center at RUMC.
The proposed project is an excellent fit with the PI’s background experience. The project
will establish the foundation for future formal collaborations with state and federal government
agencies such as the Mental Health Board of McHenry County, as well as the Department of
Health and Human Services and AHRQ. In this project, Dr. Rossi will be responsible for
performing the telehealth consultations in the emergency department and ambulatory clinic
setting,administration and oversight, study design, oversight of data collection, and reporting.
Additional Personnel – RUMC will contribute the expertise of the following personnel:
(1) Statistician (Elizabeth Avery). The statistician will assist with the study design and data
analysis. (2) Strategic outreach project manager (Cheston Brauer). This project manager will
periodically review (every 60 days) the IT operations of the project. He will act as the liaison
between the PI, O&A, and RUMC legal affairs to ensure that operations remain in line with the
contracts currently in place between O&A and RUMC, and with the contract currently being
executed between Centegra Healthcare Systems and RUMC. (3) Preventive medicine
consultant (Steven Rothschild, MD). This consultant will …. (4) Health IT programmer (Leopoldo
Cendejas Zaragoza). The programmer has extensive experience with C programming and
database programming. He has developed the HIPAA-compliant provider network database and
the patient data collecting tool using the Alpha V software development platform. He has
experience with IT and has co-documented a tutorial for the use of the technology.
Care Coordination Team – The care coordination team will consist of the nurse
clinician, social services coordinator, direct service coordinator, and Spanish interpreter. The
nurse clinician will be employed by RUMC and will be located at O&A in McHenry County. The
two coordinators and the interpreter will be O&A employees located in McHenry County.
(1)
Social services coordinator (Nancy Monica). The social services coordinator will be
responsible for patient recruitment and local provider relations. Ms. Monica is the co-founder
and current coordinator of the Epilepsy program within O&A. She has a proven track record for
outreach and recruitment of individuals with epilepsy who are in need of services. She has
developed contacts for the services throughout McHenry County and has performed annual inservices in every school in the county that are directly targeted to teaching/aide staff and
separately to school nurses. Her outreach and education presentations address the effect of
seizures on education and future potential and the importance of early detection. Her outreach
- 16 -
activities have included regular speaking engagements at the Rotary Club, Lions Club, and
Chamber of Commerce mixers. She has presented at McHenry County Health Department
events involving all staff, a special health department/day provider forum, and McHenry County
Mental Health Board county-wide education events. Ms. Monica has joined boards, committees,
and task forces in the county that connect directly with potential patients. She was President of
the Human Service Network of McHenry County, which was a group of social service providers
in the county that worked collaboratively to ensure services to clients. She is also a member of
the Traumatic Brain Injury (TBI) task force (TBI prevention), the TBI Panel (proving direct
services for all TBI patients), and the Youth Service Bureau.
(2)
Direct service coordinator (Kim Babiarz). The direct service coordinator is responsible for
working directly with patients. She provides follow-up phone calls, well check phone calls,
testing coordination (lab, imaging, EEG), clinic scheduling, telemedicine scheduling,
transportation coordination, support group meeting facilitation, individualized educational plan
(IEP) assistance, disability assistance, RUMC charity care coordination for both inpatient and
outpatient services, medication assistance, and linkage and community-based psychosocial
service referrals.
(3)
Nurse clinician (Robin Everson RN, MS). The nurse clinician is a member of the Rush
Epilepsy Center with an emphasis on McHenry County. She will be responsible for overseeing
the clinical management and continuity of care of epilepsy patients and families. Her role will
include the coordination of patient treatment through physical presence and telemedicine visits.
She will assist in care coordination working with O&A Epilepsy Support Program staff and
RUMC ambulatory and inpatient medical care. In collaboration with the PI, she will assume
primary responsibility for a selected caseload of patients in the ambulatory setting. She will
dictate progress notes and enter all required documentation in an EMR for enrolled patients.
She will order laboratory work, interpret screening and diagnostic procedures and tests, and
appropriately communicate and document information. She will also effectively facilitate followthrough and outcome evaluation, and will document and track all data as required by grant
protocol. She will evaluate and respond to interventions and modify the plan of care for patients
as appropriate. The nurse clinician also collaborates with home care/community agencies to
assume continuity of care for assigned caseload.
(4)
Spanish Interpreter (Yesenia Flores). Ms. Flores provides direct services in conjunction
with Kim Babiarz to all Spanish speaking families, coordinating each of the activities as needed.
Ms. Flores works with families to identify cultural differences and helps the care coordination
team to understand and meet their individual needs.
G.
Project Administration
An agreement has been established between RUMC, O&A, and the Mental Health
Board of McHenry County to contract the PI as a specialized epilepsy care provider for the
county. This contract accommodates all epilepsy-related outreach healthcare at no charge to
the insured and uninsured patients. On-site tertiary care (Level 4) resources physically located
up to 80 miles away (RUMC) will continue to be billed to insurance carriers, and RUMC charity
care is sought for the uninsured patients. A contract is currently being executed to establish a
telehealth relationship between the PI and Centegra Health System emergency departments,
with the aim of transitioning high quality technology-intensive care to an emergency department
setting as coordinated by O&A.
Options and Advocacy (O&A) for McHenry County began in 1994 providing preadmission screening and case coordination services to people with developmental disabilities.
Today, nearly 20 years later, O&A provides coordination of care for people with developmental
- 17 -
disabilities and co-morbid psychiatric conditions, and offers a number of programs to a variety of
client populations. Current programs include Child & Family Connection (CFC) for children
under the age of three; Community Access Coordination (CAC) serving everyone over the age
of three; the Epilepsy Support Program for infants, children, and adults with epilepsy; and the
Autism Support Program for children and young adults who have or suspect they have an
autism spectrum disorder. With a staff of 31, O&A serves more than 1500 individuals annually in
Northeastern Illinois, and provides screening, case coordination, information and referral,
advocacy, education and support services.
The Epilepsy Support Program within O&A was established in 2010. This program
provides a wide range of service coordination activities including epilepsy education, medication
access and monitoring, advocacy, training of school staff, development of individual seizure
plans, employment counseling, support groups, information links, and referrals. The program
also creates access to neurological evaluations and care through local epilepsy clinics. In
addition, the program enables O&A to provide a higher level of coordination for clients who,
along with epilepsy, have other disabling conditions. Lastly, it also improves access to the best
epilepsy neurologists and other specialists at a remote tertiary care medical center (RUMC).
The Epilepsy Support Program is designed to help clients reach their full potential in an
environment of empowerment by focusing on building independence and understanding and
managing their epilepsy effectively. A large component of the program focuses on community
education and occurs in schools, agencies, clinics, and at other sites. The program currently
serves 451 patients per year.
Centegra Medical Center and Healthcare System (McHenry County, IL) is the only health
system located in McHenry County. Centegra Health System has been a leader in innovative
medical treatment combined with understanding and compassionate patient care. Centegra
provides the McHenry County area with three Immediate Care Centers located in the McHenry
and Woodstock hospitals and on the Huntley health campus, Centegra Gavers Breast Center in
Crystal Lake and 13 Centegra Physician Care locations in McHenry County. Centegra is
McHenry County’s largest employer with 4,000 Associates and 500 volunteers. Centegra
continues to grow and expand, ensuring the community will receive high-quality health care in
the future. The total licensed beds for Centegra Hospital-McHenry is 181, and Centegra
Hospital-Woodstock is 166.
Timeline – The research timeline is provided below. RUMC anticipates completing the
health IT development and implementation prior to the beginning of the project period.
Activity
Complete consultant and
partnership arrangements with
Centegra Medical Center
Complete field beta testing of
HIPAA-compliant patient and
provider network software
Complete organizing workflow for
continuing production of animated
education series
Begin patient enrollment and
collect baseline medical history
Follow patients for a minimum of
Responsibility
Q1
RUMC
X
RUMC and
O&A
X
RUMC
X
RUMC and
O&A
RUMC and
- 18 -
Year 1
Q2 Q3
Q4
X
X
X
X
X
X
Q1
X
Year 2
Q2 Q3 Q4
X
X
X
12 months and collect data on
intervention
Begin analyzing and interpreting
collected data
Finalize dissemination plan
H.
O&A
RUMC
X
RUMC and
O&A
X
X
X
X
X
Dissemination
The PI and O&A coordinators plan to widely disseminate information about this project,
in the form of reports, presentations, and journal articles. The Epilepsy Foundation of America
(Phil Gattone, President), Epilepsy Foundation of Greater Chicago (Kurt Florian, Executive
Director), and the Epilepsy Foundation of Rockford, IL will publish progress of the outreach
initiative on their websites. The O&A coordinators (Nancy Monica and Kim Babiarz) will present
the initiative’s background and progress at regular McHenry County Mental Health Boardrelated events. Progress will be presented at the American Epilepsy Society every December,
following submission of an abstract for poster or platform presentations in June of each
respective year. The PI will prepare a manuscript presenting the full dataset for submission to a
journal such as Epilepsia, Epilepsy Research, and/or Population Health Management at the
completion of this exploratory study.
RUMC and O&A will also disseminate project activities in cooperation with AHRQ’s
National Resource Center on Health IT, and will cooperate fully with AHRQ staff and contractors
in promoting the results of this project.
I.
Budget
o
The budget must include funding to allow the Principal Investigator/Project Director and
at least one key program staff member of the project to attend at least three days of an
annual AHRQ grantee meeting in the Washington DC area for every year of funding.
Total budget is $300,000 over two years, and the maximum you can spend in any single year is
$200,000.
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