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 -1- 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 -2- 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. -3- 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 -4- 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. -5- 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 -6- 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 -7- 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 -8- 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. -9- 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, - 11 - 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 - 14 - 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. - 19 -