FACILITIES AND OTHER RESOURCES - OVERALL
The necessary infrastructure at the University of Utah (prime performance site) and other participating sites (Table 1) are available to support the application, Utah Center for Clinical and Translational Science (Utah CCTS). The assembled team for this innovative center is comprised of experienced principal investigators, mentors and other stakeholders committed to supporting the vision and mission of the Clinical and Translational Science Award (CTSA) consortium. The Principal Investigators, Co-Investigators, and other personnel have the necessary organizational and administrative infrastructure to successfully develop, implement, and evaluate center programs to support the national CTSA consortium.
Table 1. Utah CCTS Facilities and Other The Genetic Science Learning Center 4.A Resources Office for Equity and Diversity 4.B Resource Section Center for Law and Biomedical Sciences 4.C Intermountain West 1 The Center for Medical Innovation 4.D The Intermountain West 1.A Vice President’s Clinical & Translational 4.E State of Utah 1.B Scholars Program Salt Lake City 1.C University of Utah Molecular Medicine 4.F University of Utah (U of Utah) and 2 Program University of Utah Health (U Health) Department of Population Health 4.G University Hospital 2.A Sciences Community Clinics 2.B Department of Biomedical Informatics 4.H Huntsman Cancer Institute (Laboratory) 2.C • Biomedical Natural Language • Cancer Biostatistics 2.C.1 Processing 4.H.1 • Pedigree and Population Resource 2.C.2 Entertainment Arts and Engineering 4.I Huntsman Cancer Hospital 2.D Program and GApp Lab University Orthopaedic Center 2.E U Health Core Facilities 5 University Neuropsychiatric Institute 2.F Administration 5.A John A. Moran Eye Center 2.G Biomedical Image and Data Analysis 5.B Cardiovascular Center 2.H Core Clinical Neurosciences Center 2.I Cell Imaging Facility 5.C Utah Diabetes and Endocrinology 2.J Centralized Zebrafish Animal Resource 5.D Center DNA Peptide Facility 5.E School of Medicine 2.K DNA Sequencing Facility 5.F School of Dentistry 2.L Drug Discovery Facility 5.G College of Health 2.M Electron Microscopy 5.H College of Nursing 2.N Flow Cytometry Facility 5.I College of Pharmacy 2.O Genomics Facility 5.J Additional U Health Resources 3 Machine Shop 5.K University of Utah Institutional Review 3.A Mass Spectrometry and Proteomics 5.L Board Metabolic Phenotyping 5.M Office of Sponsored Projects 3.B Metabolomics Facility 5.N Technology & Venture 3.C Mutation Generation & Detection Facility 5.O Commercialization Nuclear Magnetic Resonance Core 5.P Telemedicine Capabilities 3.D Facility Utah Population Database 3.E Small Animal Imaging Facility 5.Q Information Technology Services 3.F Small Animal Ultrasound Facility 5.R • Enterprise Data Warehouse 3.F.1 Utah Nuclear Engineering Facility 5.S • MyChart 3.F.2 Scalable Analytics & Informatics 5.T • Value Driven Outcomes 3.F.3 Cell Therapy and Regenerative 5.U • Center for High Performance 3.F.4 Medicine Program Computing • Blood & Marrow 5.U.1 • Network 3.F.5 Collection/Processing Services & ARUP Laboratories 3.G Activities Path PCORnet clinical Data Research 3.H • Product Development & 5.U.2 Network Translational Research 5.U.3 Eccles Health Sciences Library 3.I • Contract Manufacturing • 5.U.4 Supporting U Health Academic 4 Novel Cellular Therapy Clinical Trial Initiatives and Resources Support Utah CCTS Cellular Translational 5.V • Enterprise Data Warehouse 7.E.8 Research Core • Clinical Information Systems 7.E.9 U Health Regional Affiliate Network 6 • Knowledge Management 7.E.10 U Health Regional Affiliate Network 6.A • Intermountain Health Answers 7.E.11 Intermountain Healthcare 7 • CV DNA Lab 7.E.12 (Intermountain) • Intermountain Biorepository 7.E.13 Intermountain Hospitals 7.A • Intermountain Communications 7.E.14 7.E.15 Intermountain Ambulatory Clinics 7.B • Transformation Laboratory Intermountain Instacares/Emergency 7.C • Select Health Departments Veterans Affairs Salt Lake City 8 Clinical Programs & Specialties 7.D Healthcare System (VA) • Cardiovascular 7.D.1 Veteran’s Affairs Salt Lake City Health 8.A • Pulmonary Critical Care 7.D.2 Care System • Oncology 7.D.3 George E. Wahlen VA Medical Center 8.B • Maternal Fetal Medicine 7.D.4 VA Informatics and Computing 8.C • Neonatal Intensive Care Unit 7.D.5 Infrastructure • Pediatrics HealthInsight 9 7.D.6 • Surgical Services Laboratory 9.A 7.D.7 • Internal Medicine Animal 9.B 7.D.8 • Orthopedics 7.D.9 Computer 9.C • Emergency Medicine Department 7.D.10 • Hardware 9.C.1 • Screening Clinics 7.D.11 • Networks 9.C.2 • Family Practice 7.D.12 • Data Storage, Backup, and Access 9.C.3 Core Services Provided by 7.E Rights Intermountain Office 9.D • Office of Research 7.E.1 Clinical 9.E • Institutional Review Board 7.E.2 Biohazards 9.F • Institute for Healthcare Leadership 7.E.3 Clinical Faces of Utah (CFU) 10 • Clinical Genetics Institute 7.E.4 Utah Department of Health (UDoH) 11 • Intermountain Homecare 7.E.5 Utah All Payer Claims Database 11.A • Homer Warner Center for 7.E.6 Informatics Research 7.E.7
1. THE INTERMOUNTAIN WEST REGION
1.A. The Intermountain West The University of Utah (U of Utah) healthcare system (U Health) is the only academic health center serving Utah, Wyoming, Idaho, and Montana. Utah is located in the Intermountain West, comprised of Utah, Nevada, Montana, Wyoming, New Mexico, Idaho, Arizona, and Colorado. The Intermountain West collectively encompasses more than 10% of the continental United States. Importantly, this region contains not only urban and suburban, but also large rural and immense frontier areas. The population of the region, over 22 million in the 2010 census, is steadily growing (Figure 1).
1.B. Utah According to the US Census Bureau, the State of Utah is the fastest growing state in the U.S. with a current population estimate of 3 million residents. This growth is attributed to a higher than the national average birth rate but also net in-migration from other states and countries. This population is unique, with lower median age (30.7% under 18, average age 29.2), larger families (3.12 persons per household compared to 2.63) Importantly, many of Utah’s families are multigenerational, and have a long history in the state and surrounding region. Utah is a racially and ethnically diverse state. Utah’s minority share exceeds 20% and is comparable to national averages, with large Hispanic/Latino communities, and significant Native Hawaiian/Pacific Islander, Asian, Black/African American, and multiethnic communities. Utah is home to seven Native American tribes/nations: Shoshone, Goshute, Confederated Tribes of the Goshute Reservation, Paiute, Navajo (Dine), White Mesa, and Ute. Of note, amongst Pacific Islander communities, approximately one of four people of Tongan descent living in the Figure 1. Population of the Intermountain West. The eight states United States live in Utah. Over 40 that form the Intermountain West (highlighted in red) have a collective languages other than English are population of over 22 million, and have exhibited steady population primary languages in Utah growth for over 100 years. households. Unfortunately, this diversity comes with associated healthcare disparities. Many Utah communities, particularly Native American/Alaskan Native, Black/African American, Hawaiian/Pacific Islander, and Hispanic/Latino communities are medically disadvantaged, with indicators of worse health and less insurance/ability to pay for healthcare than the White population, underscoring the importance of the Utah Center for Clinical and Translational Science’s (CCTS) efforts in the area of community engagement.
In addition to being racially, ethnically, and socially diverse, Utah has a unique combination of urban, suburban, rural, and frontier communities. 90% of the state is rural, with a population of less than 100 individuals per square mile; 70% of the state is considered frontier with less than 7 individuals per square mile
1.C. Salt Lake City Salt Lake City is home to the main offices and flagship hospitals of all of the Utah CCTS partners. Salt Lake City is located in Salt Lake County, a County that is home to a diverse population of approximately 1 million individuals (2015 estimate). In Salt Lake City, 24% of the population identifies as Hispanic/Latino (of any race), compared to the national average of 16.3%; 2.3% identify as Native Hawaiian/Pacific Islander and 1.2% identify as American Indian/Alaskan Native compared to the national average of 0.9%. The non-white distribution of Asian, Black/African American, and Native Hawaiian/Pacific Islander populations are
Figure 2. Racial demographics of Salt Lake County & City. The racial diversity of Salt Lake Count & Salt Lake City are comparable to national averages.
US (White excluded)
SLC (White excluded)
United States
Salt Lake County
Salt Lake City
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
White Some Other Race Asian Two or More Races Black or African American Native Hawaiian and Other Pacific Islander American Indian and Alaska Native represented equally, while the national average of non-whites is predominantly African American (Figure 2).
2. UNIVERSITY OF UTAH (U OF UTAH) AND UNIVERSITY OF UTAH HEALTH (U HEALTH) Nearly 3,000 people of Tongan descent live in Salt Lake City alone.
University of Utah (U of Utah) The U of Utah is the state's flagship university, offering more than 100 undergraduate majors and 92 graduate degree programs (Letter of Support (LOS) Dr. Pershing). The Carnegie Classification of Institutions of Higher Education designates the university with its highest ranking. The 17 colleges and schools incorporate nearly 100 departments. These include graduate studies at the School of Medicine (Utah's only medical school), the S.J. Quinney College of Law and Colleges of Engineering, Health, Nursing, Pharmacy, Social and Behavioral Science, and Social Work. There are over 20,000 undergraduate and 7,500 graduate students
U Health includes the University of Utah healthcare delivery system and the School of Medicine, College of Pharmacy, College of Nursing, and College of Health. U Health and the Utah CCTS partners are engaged with patients and study participants from Utah and the entire Intermountain West. The combined catchment area of U Health includes Utah and portions of Idaho, Wyoming, Nevada, Montana, Arizona, New Mexico, and Colorado.
Overview of U Health U Health is the Intermountain West’s only academic health care system, combining excellence in patient care with the latest in medical research and teaching. U Health includes four hospitals: University Hospital, Huntsman Cancer Institute, University Orthopaedic Center, and the University Neuropsychiatric Institute; 11 community clinics; and several specialty centers including the John A. Moran Eye Center, the Cardiovascular Center, the Clinical Neurosciences Center, and the Utah Diabetes Center. Collectively, U Health has 680 inpatient beds and provides care for 1.2 million Utahns and residents of five surrounding states in a referral area encompassing more than 10% of the continental United States. U Health is staffed by over 1,400 board- certified physicians representing 200 medical specialties, 8,000 committed staff members, and over 700 full- time registered nurses. In 2014, U Health logged 22,831 inpatient admissions and 3,701 births. U Health is also one of the largest providers of ambulatory services in Utah, with connections to more than 70 general and specialty outpatient clinics and over 770,000 patient visits per year. As part of an academic health care system, U Health leverages its ties to the U Health Schools of Medicine and Dentistry, and Colleges of Nursing, Pharmacy, and Health, to advance translational research projects to transform patient care. A. Lorris Betz, MD, PhD, is the Interim Senior Vice President for U of Utah Health Sciences and CEO of U Health (LOS).
2.A. University Hospital Named the #1 academic medical center in quality, safety, and accountability by Vizient, Inc. in 2016, the University Hospital and its team offers the entire spectrum of health care, from routine screenings and outpatient visits to trauma emergencies. With a deep understanding of the long and difficult healthcare journeys often experienced by patients, the Hospital workforce prides itself on providing treatment, solutions, and cures for all health care issues. This clinical workforce collaborates extensively with research and academic partners to push the limits of knowledge in science and medicine. The University Hospital is physically situated alongside the Eccles Institute of Human Genetics, the John A. Moran Eye Center, the Huntsman Cancer Institute, and Primary Children’s Medical Center buildings on the U Health campus. Hospital leadership encourages cross-disciplinary collaboration among clinicians, basic scientists, and bioinformatics experts.
2.B. Community Clinics U Health operates 11 community clinics (including an Internal Medicine faculty practice) and 19 dialysis centers spread across the entire State of Utah. In conjunction with the U Health Regional Affiliate Network (U Health Regional Affiliate Network below), U Health provides services to residents throughout the state (LOS Dr. Terry and Mr. Tad Morley).
2.C. Huntsman Cancer Institute (HCI) Laboratory HCI is part of U Health and a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center, meeting the highest standards for cancer care and research. HCI is also a member of the National Comprehensive Cancer Network (NCCN), a Figure 3. HCI catchment area. HCI is the only NCI- not-for-profit alliance of the world’s leading cancer Designated Cancer Center in the Intermountain West. centers. NCCN is dedicated to improving the HCI patients come not only from Utah, but from quality and effectiveness of care provided to Nevada, Idaho, Wyoming, and Montana (shaded). patients with cancer. HCI serves thousands of cancer patients throughout the Intermountain West every year and provides academic and clinical training for future physicians and researchers. Although Utah is our primary catchment area, patients are referred from a broad, multistate region that includes portions of Idaho, Montana, Nevada, and Wyoming (Figure 3) - an area that historically exhibits poor cancer outcomes compared to the U.S. average. HCI is committed to equity in research opportunities for all genders and minority groups in our catchment area. Research at HCI includes the Cancer Health Equity team run by Ana Maria Lopez, MD (Associate Director, Utah CCTS Community and Collaboration Core); Population Sciences led by Cornelia Ulrich, MS, PhD (Utah CCTS Executive Steering Committee member); and the Pedigree and Population Resource led by Ken Smith, PhD (Utah CCTS UPDB Director) among many others. Select HCI resources relevant to this proposal are described below.
2.C.1. Cancer Biostatistics provides biostatistical and biomathematical support for basic, clinical, and epidemiological studies underway at HCI. The range of support includes assisting basic and clinical investigators with study design, sample size/power calculations, data analyses, and preparation of presentations, grant applications and manuscripts. Emphasis is placed on early consultation to allow adequate consideration of study designs specifically adapted to the main objectives of the study. The cancer biostatistics team actively seeks collaborations suggested by recent developments in cancer-related biostatistical research and responds to methodological challenges emerging from specific applications. This service is offered through a collaboration with the Population Health Research Foundation for Discovery of the Utah CCTS and is led by Dr. Kenneth Boucher (Research Methods).
2.C.2. Pedigree and Population Resource, directed by Dr. Ken Smith (LOS), provides database services to users of the Utah Population Database (see below) including 1) computer access and software designed specifically to aid in analysis and management of data using Sybase database management system, SAS analytics tools, pedigree tools, record linking software, 2) consultation about research design and use of the database and software, and 3) collaboration on research analyses.
2.D. Huntsman Cancer Hospital The Huntsman Cancer Hospital is a 442,000 square foot, 100 inpatient room hospital that houses state-of-the- art diagnostic, detection and treatment equipment, complete surgical facilities as well as facilities critical to cancer care including 102 outpatient exam/procedure rooms, eight operating rooms, three endoscopy suites and a large radiation oncology suite with radiographic fluoroscopic imaging capability and a cyclotron to generate isotopes for PET scanning, assisting in state-of-the-art cancer diagnostic imaging and disease detection.
2.E. University Orthopaedic Center The University Orthopaedic Center is one of the nation's leading specialty hospitals providing the latest in sports medicine, total joint knee and hip replacement, physical therapy and a complete range of orthopaedic services.
2.F. University Neuropsychiatric Institute (UNI) UNI is a highly-ranked hospital and behavioral health facility offering patient-centered care to treat all aspects of behavioral health, including biological, psychological, social, and spiritual elements. UNI’s core values are compassionate care, collaborative research, and community involvement. UNI specialists treat conditions such as anxiety, eating disorders, major depression, mood disorders, personality disorders, schizophrenia, and substance abuse/chemical dependency. UNI offers day treatment programs and support groups.
2.G. John A. Moran Eye Center The Moran Eye Center is located on the campus of the U of Utah, conveniently located for both clinical consultants and patients with undiagnosed ocular disorders, and also offers 11 community locations across the Wasatch Front. It is the largest facility of its kind in the Intermountain West and offers access to more than 35 specialists who provide services to 120,000 patients and perform >8,000 procedures annually. The Center provides leading-edge care for the full range of vision and eye conditions, including adult and pediatric retina, glaucoma, cataracts, cornea, neuro-ophthalmology, ophthalmic plastic surgery, pediatric ophthalmology, external eye diseases, and emergency services. The Center also offers the latest advances in LASIK and refractive surgery, as well as a full range of optometry services including contact lenses and eyeglasses. In addition to clinical excellence, The Moran Eye Center has an extensive research enterprise.
2.H. Cardiovascular Center The U Health comprehensive cardiology program offers the latest innovations in cardiac care and clinical therapies. The Center offers active inpatient service, dealing with all types of cardiovascular disease such as heart attack, acute coronary syndromes, heart failure, hypertensive emergencies, and serious rhythm abnormalities.
2.I. Clinical Neurosciences Center (CNC) The CNC works hard to create customized treatment plans for patients, with an emphasis on early treatment and diagnosis. The CNC also promotes awareness and education, sharing these prevention practices through community events and support groups. Working with the departments of neurology, neurosurgery, and radiology, the CNC team is committed to teaching a new generation of medical providers, improving diagnosis and treatment through research, and healing.
2.J. Utah Diabetes & Endocrinology Center (UDEC) The UDEC was established to improve the quality of life for people with diabetes and other endocrinology disorders. UDEC helps reduce complications and suffering for diabetes patients, contributing to prevention and cures. For patients with other endocrinology disorders, including nodules in the endocrine system, UDEC offers specialty care and individualized treatment plans that focus on the patient’s needs. UDEC also provides tailored diabetes education to patients of all ages and is the only facility for comprehensive and continuous diabetes care and management in Utah and the Intermountain West region. UDEC is a research facility, consistently researching and applying the newest findings in the field of diabetes management and care.
2.K. School of Medicine The U Health School of Medicine is home to 23 clinical and basic science departments. These departments include the following: Anesthesiology, Biochemistry, Biomedical Informatics, Dermatology, Family & Preventive Medicine, Human Genetics, Internal Medicine, Neurobiology & Anatomy, Neurology, Neurosurgery, Obstetrics & Gynecology, Oncological Science, Ophthalmology & Visual Sciences, Orthopaedics, Pathology, Pediatrics, Physical Medicine & Rehabilitation, Physiology, Population Health Sciences, Psychiatry, Radiation Oncology, Radiology & Imagine Sciences, Surgery.
2.L. School of Dentistry The mission of the U Health School of Dentistry, established in 2013, is to improve the oral and overall health of the community through education, research, and service based on: academic excellence; exceptional, compassionate, and innovative patient-centered care; research to advance knowledge and continually improve oral health; community collaboration, enrichment, and service; and leadership. The School of Dentistry offers a Doctor of Dental Surgery, a General Practice Residency Program, and Continuing Education opportunities. The School also offers research opportunities with a focus on improving oral health on the population level. Research topics range from genetics to preventive education.
2.M. College of Health The College of Health is among the largest of the colleges and schools at U of Utah with 2,500 undergraduates and 600 graduate students. Degree options include 18 BA/BS degree emphases, 16 master’s degree programs, three clinical doctorates, and five PhD programs. This combination of graduate degrees, professional programs, and undergraduate majors uniquely positions the College of Health to contribute to the clinical, educational, and research missions of U Health. Departments in the College of Health include the following: Communication Sciences and Disorders; Health, Kinesiology, and Recreation; Nutrition and Integrative Physiology; Occupational and Recreational Therapies; Physical Therapy and Athletic Training. Faculty in the College of Health conduct research and promote scholarly activity that furthers an understanding of treatment and effective practices, including those that can be successfully applied in community, clinical, and rehabilitative settings. Currently the College supports 30 laboratories and clinics that perform research, and also provide valuable services to the community, professions, and the U of Utah.
2.N. College of Nursing The mission of the College of Nursing is to work together to serve the people of Utah and beyond by continually improving the quality of life for individuals and communities. The College offers education, research, and clinical care experiences. Diversity and inclusiveness, independent inquiry, and collegiality form the fabric of everyday life for faculty and students in the College. Degrees offered by the College include the following: Bachelor of Science with RN/BSN tracks, Master of Science in Nursing, Master of Science in Gerontology, Doctor of Nursing Practice, and Doctor of Philosophy. The College also has a vibrant research program with a mission to provide exceptional centralized support services that facilitate faculty success with research development, grant submission and management, and scholarly activity.
2.O. College of Pharmacy The U Health College of Pharmacy is committed to excellence and innovation in the education of future pharmacists, research in the pharmaceutical sciences, and service to the community and profession. Departments within the College of Pharmacy include Medicinal Chemistry, Pharmacology and Toxicology, Pharmacotherapy, and Pharmaceutics & Pharmaceutical Chemistry. All four Departments offer PhD programs and research opportunities, and the College offers a PharmD. The College’s mission is to advance healthcare related to optimal medication outcomes through education and training; discover, develop and disseminate new biomedical knowledge and technology; and provide pharmacy-based services and outreach activities to the community. The College of Pharmacy partners with a number of centers and programs to offer cutting edge research experiences. These partners include: Anticonvulsant Drug Development Program, Center for Cell Signaling, Center for Controlled Chemical Delivery, Center for Human Toxicology, Pharmacotherapy Outcomes Research Center, Utah Center of Excellence in Therapeutic Biomaterials, International Cooperative Papua New Guinea Biodiversity Group, and the Utah Poison Control Center.
3. ADDITIONAL U OF UTAH RESOURCES
3.A. University of Utah Institutional Review Board (IRB) The basis for the Single IRB Model is to allow multiple institutions that are conducting the same protocol to use a single IRB Review, instead of using multiple IRBs to review the research at the sites individually. The single IRB Model has been in use for many years, across a wide variety of studies and circumstances. According to the new NIH policy on Single IRB Review, “The goal of [the Single IRB Review Model] is to enhance and streamline the IRB review process in the context of multi-site research so that research can proceed as effectively and expeditiously as possible.” At the U of Utah, we feel that while Single IRB Review may help to streamline the study initiation process, but it is important to understand all of the components of the Single IRB model that must be completed beyond just the IRB review. Efficient performance of all stages of study initiation and conduct will help to ensure multi-site research is effective and expeditious. John Stillman, Network Capacity IRB Expert, is the IRB Director, and Ann Johnson (LOS) is the IRB’s Associate Director.
3.B. Office of Sponsored Projects (OSP) The mission of OSP is to enhance research by providing service and support to administration, faculty, and staff in their efforts to secure and manage external funding for U of Utah activities. OSP is directed by Mr. Brent Brown (LOS) and employs 16 federal/foundation grants and contracts officers and 10 industry contracts/clinical trials officers. OSP managed over $438 million in awards in FY16, an increase of $20 million from FY15. Of this total portfolio, 61% of awards are federal and 19% are industry projects.
3.C. Technology & Venture Commercialization (TVC) TVC at the U of Utah is dedicated to commercializing new technologies and inventions from discoveries made and developed at the U of Utah. Commercialization is accomplished by applying a stage-gated, milestone- driven process that has as an end-goal of licensing intellectual property, building beneficial commercial partnerships, supporting the community and educating students, transforming smart ideas into life-changing applications. The TVC serves as a resource for the University community in understanding their intellectual property responsibilities, actively solicits invention disclosures through presentations and meetings with inventors, and participates in educating the University community about their responsibilities toward sponsoring agencies and the University. The TVC administers University policy regarding inventions, patenting, licensing, monitoring agreements, payments to inventors and the University, and obligations to sponsoring agencies.
3.D. Telemedicine Capabilities The University of Utah has a primarily clinical telemedicine program housed at U Health and a statewide program, the Utah Telehealth Network (UTN). UTN’s leadership has served as a clinical and educational telehealth resource to the Intermountain West for over 20 years. Providing almost 20 different clinical teleconsultations through a network of more than 60 facilities across a six-state region, U Health is a leader in telemedicine services. High-resolution video imaging allows medical specialists to provide teleconsultations at a distance. Telemedicine services are provided in clinics, hospitals, prisons, and directly to patients’ homes via a system of cameras, speakers, and digital screens that include mobile technologies. U Health was one of the first adopters of the evidence-based tele-education program, Project ECHO. This cost-free partnership between community clinical networks and an interdisciplinary team of professionals from U Health serves to ameliorate care of patients with chronic and complex diseases in rural and underserved areas.
UTN supports a broadband network to rural hospitals, clinics and health departments throughout Utah. From connecting to one rural hospital and two rural health departments in 1997, UTN has grown to connect over 40 unrelated health care sites throughout Utah providing security and network services and videoconferencing support and supporting delivery of education and clinical services. The Utah Education Network was established by the Utah State Legislature in 1989 and connects around 1,400 educational and community sites. The Utah Education Network provides a broadband and broadcast infrastructure to the entire state, supports applications including Canvas (a learning management system), a digital media library, and interactive videoconferencing; and supports those who use the Network. In 2014, UTN merged with the Utah Education Network to create the Utah Education and TeleHealth Network, a large, multidisciplinary, university- based program that facilitates telehealth services, distance learning, informatics training, and telemedicine technology assessment capabilities to communities throughout Utah.
The Four Corners Telehealth Consortium was formed along the borders of New Mexico, Arizona, Utah, and Colorado to serve as a model for regional telehealth collaboration in the U.S., unconstrained by geographical or jurisdictional barriers. Representatives of telehealth and health information initiatives in the four states have been developing specific collaborative initiatives including: 1) Establishment of an interstate licensure process; 2) Coordination of a virtual "eHealth" University for distance learning; 3) Coordination of provision of telehealth clinical services representing best practices; and 4) A process for interstate disaster response.
3.E. Utah Population Database (UPDB) The UPDB, directed by Dr. Ken Smith (LOS), is a rich source of information for genetic, epidemiological, demographic, and public health studies. UPDB is the largest genealogical database in the world, housing genealogical records of more than 9 million individuals from across the globe (Figure 4). The UPDB, with information including medical and vital records, and demographic profiles as well as multigenerational pedigrees, and geospatial markers, has supported hundreds of epidemiological and genetic studies for the past 35 years. The UPDB contains exceptional data due to the extensive record linking and quality control efforts conducted by experienced Pedigree and Population Resource staff. Figure 4. Geographic reach of the Utah Population Database. The first panel depicts the number of individuals alive today, by state of birth, that are represented within the UPDB. The second panel depicts the number of individuals alive today, by country of birth, represented within the UPDB.
The central component of UPDB is an extensive set of Utah family histories, in which family members are linked to demographic and medical information. The majority of individuals represented in UPDB are linked to other related individuals, with a special emphasis on genealogy records of the founders of Utah and their Utah descendants. These genealogical records are linked to state-wide medical information on cancer, cause of death, hospital inpatient discharges, and medical details associated with births (Table 2). Since many of the data sets in UPDB receive annual electronic updates, the UPDB is a dynamic and constantly improving database. These data can only be used for biomedical and health related research.
Table 2. UPDB Data Contributors Contributor Data Contributed State of Utah Utah Statewide Inpatient Discharge: ~4.4 million encounters (1996 – present) Utah Statewide Ambulatory Surgery: 4.2 million encounters (1996 – present) Utah All Payers Claim Data (APCD): 156 million medical claims, 64 million pharmacy claims (2013-2015) U Health U Health: ~1.9 million individuals (1996 – present) Intermountain Healthcare ~4 million individuals (1996 – present) Utah Genealogical Society Contribution of records to UPDB – 1.6 million individuals Records transfer of 90 million deceased individuals from FamilySearch into the UPDB will be completed in 2017. These individuals are likely related to individuals represented in the present UPDB and extend largely to the US and Europe. Driver License Division All driver license data collected for residents of Utah, including height, weight, and address 3.7 million licenses (early 1990s – present) Cancer Registries Utah: 325,000 cancer diagnoses (1966-present); Idaho: 204,000 cancer diagnoses (1970- present) Contains name, address, medical history, date and method of diagnosis, stage of disease, tissue diagnosis, laboratory data, methods of treatment, recurrence and follow-up data, physician name Utah State Birth and Death Birth Certificates (1951-21, 1931-present): ~2.85 million births; Death Certificates (1904- Records present): 864,000 deaths; Fetal Death Certificates (1978-present): 10,500 deaths Utah Voter Registration 1.7 million records Medicare Claims 704,208 individuals Individual Level Census 1880, 1900-1940 (all Utah Census records for 1890 were destroyed); Federal regulations Records prevent access to individual Census records within 72 years of the present. Overall 2.3 million records
Given the vast quantity of identifying information on many sensitive data elements, extraordinary care is taken to protect individuals portrayed in the UPDB and the organizations that contribute data. Accordingly, the Utah Resource for Genetic and Epidemiologic Research (RGE), established in 1982 by Executive Order of the Governor of Utah, administers access to the UPDB through a review process of all proposals using UPDB data. Protections of privacy and confidentiality of individuals in these records is based on agreements with data contributors.
Furthermore, the UPDB has the necessary infrastructure to support such a large data set. It consists of 110GB of data and 225GB of working tables stored in a Microsoft SQL 2005 relational database. The database is hosted on a Compaq Proliant ML380 G5 server, with two 2.8MHz quad core processors and 14GB memory. This server is attached to a fibre channel EVA disk system. Another server devoted to record linking activities possesses two 2.8 Mhz quad core processors, 36GB of RAM, and 300GB of striped drive space. The equipment is housed in a 1,173 square foot climate-controlled computer room with secure logged access.
3.F. Information Technology Services U Health Technology Resources are managed by the Information Technology Services (ITS) department, including the Epic electronic health record (EHR), a clinical and administrative Enterprise Data Warehouse (EDW) and other clinical systems. ITS has a staff of 200 to implement and support a comprehensive Cerner Electronic Medical Record System (EMR) for inpatient care, an Epic ambulatory EMR for outpatient care, and many additional applications for the U Health system. A large, multimodality image storage system supports clinical and research applications in medical imaging informatics. The Utah Telehealth Network is also managed by ITS (see Telemedicine Capabilities above).
3.F.1. Enterprise Data Warehouse (EDW): Supported by ITS, the EDW is an enterprise level data repository optimized for data analysis and reporting of healthcare data. It contains data extracted from many of the institution’s disparate source systems, which includes patient, visit, clinical, operational, financial, and research data. This provides the opportunities for data mining, outcomes, and decision support research. The EDW maintains a wide-area network supporting over 200 clinical computer applications among 4 hospitals and over 100 primary and specialty centers and clinics, encompassing over 6,000 users.
3.F.2. MyChart: MyChart is a secure, online health management tool that connects U Health patients to portions of their personal medical record and University Health Plan members to their insurance information. MyChart is part of the electronic medical record system that is used throughout U Health. This includes Moran Eye Centers, the University Orthopaedic Center and Huntsman Cancer Institute. Patients who have visited any U Health hospital or clinic can use MyChart to view health summaries, current medications, allergies, immunization results, and test results released by a physician; it can also be used to request medical appointments and prescription renewals. Importantly, MyChart can be used for secure, HIPAA-compliant communication between the patient partner and their medical care team, and provides links to trusted health information resources.
3.F.3. Value Driven Outcomes: The Value Driven Outcomes tool was developed at U Health to help physicians better understand the true cost of procedures. Using an algorithm developed by an interdisciplinary team, the tool Figure 5. Visual Representation of Value. measures the institution’s true health care delivery costs at the The U of Utah value equation forms the most granular level, breaks down those costs over the full cycle basis of the Value Driven Outcomes tool. of a patient’s care, and compares the costs to outcomes in an easy-to-use, web-based format that puts actionable information directly into the hands of providers (Figure 5).
3.F.4. The U of Utah Center for High Performance Computing (CHPC): CHPC is an organization of professional faculty and staff dedicated to providing access to high performance computing for research and education. The CHPC provides space, infrastructure, and systems support for large- scale computing and advanced networking systems. Computing equipment is housed in a newly renovated state-of-the-art 74,000 sq. ft. facility with 24-hour staff support, security, and high-efficiency cooling and energy supply systems. The CHPC cluster uses a Portable Batch System job submission queue that facilitates large-scale analysis jobs. The University cluster also supports the OpenMPI message-passing interface, which allows for development and testing of scalable genome arithmetic software. All resources are HIPAA compliant. Over 30,000 square feet are developed for both enterprise computing (administrative, academic and medical uses) and research computing. The research computing component is located in a dedicated room with 1.15 MW of power and cooling available. Of this, 150 kW is Tier 3 Power with redundant UPS and diesel generator backup for at least three days, which is used for file servers and other resources deemed to be critical. The remaining 1 MW, which supports the computational clusters, has power conditioning and battery backup. The CHPC supports much of the computational and big data needs on the campus. CHPC has a mixture of general CHPC nodes, with access to these resources made available at no cost to the users, and owner nodes. The time on the general CHPC resources is awarded by an internal allocation process. Owner nodes are available, with a pre- emption policy, for general usage when not being used by the owner group. CHPC currently manages six compute clusters, with over 17,000 cores. CHPC also supports over 10PB of usable space as various scratch, group and home directory file systems. The infrastructure interconnects at bandwidths ranging from10-Gbps and 40-Gbps for Ethernet to 56 Gbps for Infinband, and connects to the campus backbone at 10 Gbps and the Science DMZ at 100Gbps. In addition, CHPC supports two VM farms, which host a variety of applications, including web services, for our users. The Center has a staff of computer professionals with a great deal of expertise in the operation of large computer systems and a scientific user support team available for software installation, consultation on usage of the resources, and collaboration on projects. CHPC operates a protected environment, consisting of both a Linux cluster, Windows server, and a virtual machine (VM) farm along with associated storage for researchers with sponsored research projects and work with data that is sensitive in nature. The resources and processes have been reviewed and vetted by the Information Security Office and the Compliance Office as being an appropriate place to work with Protected Health Information (PHI). Servers and disks in the protected environment are stored in locked cabinets that are accessible to even fewer staff. The rack containing the hardware is locked, and the devices containing sensitive data also have locked bezels, preventing local console access. CHPC has isolated this protective environment and uses a network protected logical partition that provides research groups specific access to individual data sets. Permission to access a given dataset is governed by verification against the approved users listed on the University's Institutional Review Board documentation for the project; this access as well as HIPAA certification is reviewed biannually. All access requires two-factor authentication. All logical access is monitored by SYSLOG (a standard Linux logging solution) and PSACCT (a process monitoring utility). Logs are kept both locally and on a remote SYSLOG server and are routinely reviewed with “watch reports” emailed daily to the designated administrator, which include 24 hours of accounts and IP addresses of all logins, and just as importantly, failed login attempts. Firewall configurations prevent “brute force” login attempts. The Center for Genetic Discovery’s (Precision Medicine) computing infrastructure is housed at the CHPC.
3.F.5. Network: The U of Utah maintains a fully redundant campus backbone network that serves the administrative, academic, and research needs of the main campus and the needs of the U of Utah Hospital and Clinic infrastructure. Multiple security zones are maintained in order to balance the data security and compliance requirements of the various constituencies. Multiple layers of security controls apply to various zones. The campus backbone supports technologies such as Multi-Protocol Label Switching, Virtual LANs, Virtual Routing instances, and both air-blown fiber, and conventional optical fiber. The campus backbone fully supports both IPv4 and IPv6 routing (BGP, EIGRP, OSPF, and OSPFv3) and multicast routing. The campus backbone supports multiple 10-Gbps and 40-Gbps backbone links today, and the campus uplinks to the Utah Education Network via 100Gbps. The U of Utah campus connects to the off-campus Downtown Data Center and to its upstream Internet providers by the University/Utah Education Network metropolitan optical ring that extends over the greater Salt Lake City area. This Metro Optical network supports multiple 10-Gbps and 100- Gbps wavelengths, up to a capacity of 8.8 Terabits per second.
3.G. Associated Regional and University Pathologists (ARUP) Laboratories ARUP is a national clinical and anatomic pathology reference laboratory owned by the U of Utah and its Department of Pathology. ARUP processes more than 45,000 specimens of blood, body fluid, and tissue biopsies per day from hospitals from all 50 states. ARUP serves the nation’s university teaching hospitals (including U Health), children’s hospitals, as well as multihospital groups, major commercial laboratories, group purchasing organizations, military and government facilities, major clinics, and major pharmaceutical firms. ARUP offers more than 3,000 tests and test combinations, ranging from routine screening tests to esoteric genetic and molecular assays. ARUP is a world leader in innovative laboratory research and development with experts in many areas of clinical and anatomic pathology being housed at the U of Utah Department of Pathology and ARUP Laboratories.
3.H. PaTH National Patient Centered Outcomes Research Network (PCORnet) Clinical Data Research Network PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient- Centered Outcomes Research Institute (PCORI). It is designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data and patient partnerships. In the process, it is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them. PCORnet offers the means for researchers to securely access information on the health experiences of tens of millions of patients across hundreds of healthcare organizations. It taps into resources such as electronic health records, insurance claims, and outcomes reported by patients to power robust, real-world clinical research. To date, PCORnet represents ~10 million patients who have had a medical encounter in the past 5 years, 33 engaged and collaborating partner networks, 130+ partnerships with health systems and patient groups, 150+ common and rare conditions, and $50 million in PCORI-approved funding to support demonstration projects. The U of Utah serves as a node in the PaTH Clinical Data Research Network, i.e. a network that originates in a healthcare system and securely collects health information during the routine course of patient care. Dr. Rachel Hess, a PI on this proposal, was the PI on phase 1 of PaTH and is a PI on phase 2 of PaTH. The U of Utah site operates under her leadership.
3.I. Eccles Health Sciences Library The Eccles Health Sciences Library is the central hub for information sharing and knowledge creation at the U of Utah (LOS Jean Shipman). This fully digital library provides tens of thousands of online books, journals, databases, drug data, medical device data, and multimedia resources to the Utah CCTS community. The library provides resources for a variety of groups including students, clinicians, faculty, researchers, clinical workforce, the Salt Lake City community, and other libraries. The library also offers space for teams to come together to work on projects, and events like the Research Reproducibility conference, weekly yoga classes, and provide access to apps to increase work efficiency.
4. SUPPORTING U OF UTAH ACADEMIC INITIATIVES AND PROGRAMS
4.A. The Genetic Science Learning Center (GSLC) The GSLC is a nationally and internationally recognized outreach and community engagement program whose mission is “making science and health easy for everyone to understand”. The GSLC accomplishes its mission by (1) developing educational materials for the K-12 level, patients and the public, (2) providing professional development programs for K-12 teachers, (3) providing science enrichment programs for K-12 students and families, (4) collaborating with diverse communities on community-based research and education programs, and (5) conducting rigorous research and evaluation studies. The educational materials the Center produces are primarily disseminated via its award-winning Learn.Genetics and Teach.Genetics websites. These two sites constitute the most widely used online genetics education resource in the world and probably the most widely used online life science resource. Together, the sites receive over 18 million visits and 47 million page views annually from virtually every country in the world. While the GSLC’s funding has mainly focused on developing materials for grades 5-12 and the lay public, its materials also are used at the higher education level and by a wide variety of professionals. The GSLC research and evaluation team uses both quantitative and qualitative methods to study the effectiveness of its materials and programs; it also provides these evaluation services for others. The GSLC has a multidisciplinary team including experts in science/health education and educational materials development; instructional design; science/health writing; multimedia art and animation; video/movie script-writing, direction and production; graphic design; web development; software development and programming for multiple platforms and formats, including the web and touchpad devices; videogame development; music composition and audio production; bioscience research; teacher professional development; community engagement and community-based participatory approaches; and science and health education research and program evaluation. Dr. Louisa Stark, a co-Investigator in the Community and Collaboration Core, is the Director of the GSLC (LOS). 4.B. Office for Equity and Diversity (OED) The OED is comprised of leaders, experts, and educators who drive U of Utah’s efforts to create a safe and welcoming campus climate and to engage Utah’s diverse community. The OED is deeply committed to enhancing student success, recruiting future leaders, and engaging with key community members on and off campus. The OED engages the community through events and partnerships, and provides links to services for the diverse members of the local community. Particular areas of emphasis for the OED include traditionally underrepresented minorities, women, and LGBTQ individuals. Please see LOS from Dr. Kathryn Stockton, Associate Vice President for Equity & Diversity at the U of Utah.
4.C. Center for Law and Biomedical Sciences (CLBS) In an attempt to understand, assess, and improve health conditions for local, national, and global communities, the CLBS focuses on contributing solutions to these new problem sets. In particular, the CLBS is committed to improving the law as it relates to the rapidly evolving areas of health policy, the life sciences, biotechnology, bioethics, and the medical and technological arts, in order to help overcome the most critical health-care challenges of our times through applied, interdisciplinary research, innovative teaching and training, and public service and programming. The CLBS supports a number of academic initiatives including symposia; court competitions; contributing to the university’s role as an incubator of scientific discovery; working on pro bono activities at the medical-legal clinic; pro bono guardianship projects; and publishing on emerging biomedicine and law issues. As a fulcrum for research, CLBS efforts have resulted in many publications, interdisciplinary connections across the U of Utah, participation in external research grants, and research of benefit to the local, national, and international legal and public policy communities. The CLBS partners with the Utah CCTS and Huntsman Cancer Institute to present the annual “Frontiers in Precision Medicine” symposium, aimed at addressing the scientific, legal, economic and ethical questions raised by national initiatives, such as the All of Us Initiative and the Cancer Moonshot. The CLBS also offers training opportunities in law for biomedical scientists, including a course with leading local and national authorities discussing contemporary issues on law, health care, and the biomedical sciences; and Health Law for Non-Lawyers, designed to acquaint interested students in health sciences disciplines with fundamental issues in health law. Space within the CLBS facility, the new S.J. Quinney College of Law building, may be made available to Utah CCTS for conferences or meeting space. Jorge Contreras, JD, a member of the Utah CCTS Executive Steering Committee (Administrative Core), is an Associate Professor of the CLBS. Faculty in the CLBS have also worked with Drs. Joshua Schiffman and Brandon Welch on ethical, legal, and social issues raised by the ItRunsInMyFamily health history tool (LOS, Dr. Welch, Precision Medicine).
4.D. The Center for Medical Innovation The Center for Medical Innovation combines formal education programs, faculty and student project development, and support and facilitation of device development and commercialization. The Center creates a one-stop-shop environment that assists both the novice and experienced innovator through ideation, concept generation, intellectual property, market analysis, prototyping and testing, business plan development, and commercialization. The goals of the Center are to enhance faculty professional development, develop unique multi-disciplinary educational programs in medical device entrepreneurship, and improve health care delivery through innovation and real-world applications. The Center nurtures an environment that supports students and faculty who not only want to invent something new, but who also want to find ways to launch their invention into the marketplace by providing resources, connections, and expertise.
4.E. Vice President’s Clinical & Translational Scholars Program (VPCAT) The VPCAT Research Scholars Program has been designed to offer intensive mentorship and support to junior faculty committed to careers in clinical or translational research at Utah CCTS partner institutions. VPCAT Research Scholars are selected through a competitive application process each fall; accepted scholars participate in a two-year program designed to provide leadership competencies and develop the essential research knowledge and practical skills to be an effective clinical or translational researcher.
The two-year competitive program incorporates the following: formal and informal mentoring; structured curriculum focused on leadership competencies and essential knowledge and practical skills to be an effective clinical or translational researcher; access to resources to facilitate appropriate study design, collection of pilot data and preparation and submission of competitive grant applications. A mentoring team consisting of a scientific mentor, a VPCAT senior mentor, peer mentors and staff mentors support each VPCAT scholar. Scholars have access to biostatisticians in the Utah CCTS and grant submission specialists. These resources facilitate appropriate study design, collection of pilot data and the preparation and submission of competitive grant applications. Michael Rubin, MD, PhD, MS, is the Director of VPCAT Program.
4.F. University of Utah Molecular Medicine Program (U2M2) U2M2 is a research infrastructure that is located in the Eccles Institute of Human Genetics alongside the Department of Human Genetics. U2M2 specializes in unifying preclinical and clinical research education at U Health under one umbrella. U2M2 is the key multidepartmental, interdisciplinary, translational research engine for clinical divisions including Cardiology, Endocrinology, Pulmonary, and basic science departments including Neurobiology and Anatomy and Human Genetics. As the Interim Director of Molecular Medicine, Dr. Andrew Weyrich (also U of Utah Vice President for Research) works daily with physician scientists to develop, test and implement new diagnostics and therapies for a variety of human diseases and conditions. Often, the research programs of Molecular Medicine investigators are shaped by collaborations with medical geneticists.
4.G. Department of Population Health Sciences (DPHS) The DPHS provides methodologic expertise and infrastructure that will advance capacity for population health scientists to pursue impact-driven research and allow clinical professionals to provide better patient and population-oriented care. Housed within the DPHS, the Division of Health System Innovation & Research (HSIR) serves as a home for research on improving clinical outcomes, addressing crucial issues of health care finance & reform, and how advances in medicine can best reach populations. HSIR works within U Health to create a virtuous learning cycle, enabling collaborators to develop and evaluate innovations that improve the quality of patient and population-oriented care. HSIR partners with community, clinical, and academic stakeholders to facilitate the implementation and dissemination of these unique developments in order to effect change to health systems and the delivery of care worldwide. Also within the DPHS, the Division of Biostatistics serves as a home for methodologic innovation at the U of Utah. Dr. Angela Fagerlin, co-Director of the Utah CCTS TL1 proposal, is the Department Chair. Dr. Rachel Hess, a PI on the Utah CCTS U54 proposal, is the Division Chief of HSIR. Dr. Tom Green, Co-Director Population Health Research Foundation for Discovery, is the Division Chief of Biostatistics.
4.H. Department of Biomedical Informatics (DBMI) Established in 1964 as the first Biomedical Informatics academic department in the world, the U of Utah DBMI is internationally recognized for its pioneering contributions to computer applications in clinical care, medical education and research. The mission of the department is to improve healthcare outcomes through information systems in both the private and public sectors of the health care industry. Dr. Julio Facelli, Associate Director of the Biomedical Informatics Core, and Dr. Karen Eilbeck, co-Investigator in the Biomedical Informatics Core, have their primary academic appointments in the DBMI.
4.H.1. Biomedical Natural Language Processing (NLP): The U of Utah DBMI boasts the most extensive expertise in clinical natural language processing of any academic department in the U.S., with seven primary faculty dedicated to the research, development, and clinical application of novel NLP methodologies. The faculty members lead teams in developing new algorithms for critical tasks such as information extraction, synonym identification, and active learning; in knowledge representation for interoperability of systems; and in infrastructure and techniques for successful deployment of NLP in clinical environments. As leaders in the field, they guide research and operational NLP efforts at the Veterans Administration (VA), Intermountain Healthcare, and U Health. They also hold formal leadership positions in clinical NLP, and their work is widely published and used around the world.
4.I. Entertainment Arts & Engineering (EAE) Program & The Therapeutic Games and Apps Lab (GApp lab) The EAE program is an interdisciplinary collaboration between the College of Engineering and the College of Fine Arts, including video game design and development. In addition to being one of the top undergraduate and graduate video game design and engineering programs in the country, the EAE program also produces therapeutic games and applications to be utilized in the medical world. Twenty two students from the EAE program are selected to work in the GApp lab, a collaboration between EAE, the Center for Medical Innovation and the Eccles Health Sciences Library. The GApp lab researches, develops, produces and executes medically focused apps. Projects currently being developed in The GApp Lab include an electronic health record app where medical records can be stored, an app that teaches college students how to use nanotubes, an app that helps mobilize notifications from hospitals and a web app that helps adolescents with cancer treatments.
5. U HEALTH CORE FACILITIES
5.A. Administration The U Health Core Facilities operate under central administration headed by Dr. John Phillips (LOS), who reports to Dr. Andrew Weyrich, the Vice President for Research (LOS). The administrative office is managed by three administrative professionals and is responsible for the personnel management, budget preparation, financial affairs, ordering of supplies, and tracking expenses of the Core Facilities. In addition, the administrative office supports general research infrastructure for the research community. All cores operate on a charge-back basis, and the goal for each Core Facility is to provide the necessary technology and expertise for successful data generation and analysis for all faculty and students at the U of Utah. In addition, all Cores are directed by PhD level staff who are available to perform services, maintain instruments, and train users.
5.B. Biomedical Image and Data Analysis Core (BIDAC) The mission of the BIDAC facility is to provide advanced image analysis and visualization services to research laboratories at the U of Utah. BIDAC offers services and consulting that range from basic image processing to more advanced image segmentation and morphometric analysis. As a resource for advanced image and data analysis, the goal of BIDAC is, to further the scientific mission of the U of Utah by significantly enhancing the capabilities of U Health research laboratories.
5.C. Cell Imaging Facility The Cell Imaging Facility provides training and consultation on the use of confocal microscopy, widefield automated microscopy, two-photon, and software analysis tools for quantitative analysis of image data. The facility has Three Olympus FV1000 Spectral confocals, two Nikon A1 confocals, and a Multi-photon confocal from Prairie. In addition, two Nikon Ti automated microscopes and a spinning disk confocal are available for live cell imaging. A Zeiss Axioscan Z1 slide scanner is available for automated archiving of histology and fluorescence data. Automated microscopes with one of four different stage incubators are available (CO2, temperature, humidity, hypoxia) and are also available for live cell imaging. Nikon Elements, Metamorph, Imaris and Volocity software are available for 2D and 3D analysis of image data.
5.D. Centralized Zebrafish Animal Resource (CZAR) The CZAR Core Facility provides state-of-the-art systems for housing, breeding, and doing experiments with zebrafish, an emerging vertebrate model system. The CZAR underwent a major renovation/expansion in FY2016 with the goal of increasing its capacity from 5000 to 8000 fish tanks maintained on 5 independent recirculating water systems. A communal laboratory space provides areas for Zebrafish mating, embryo microinjection, and afternoon embryo production in an Alternate Light Cycle room. The design encourages intellectual and experimental synergies among research groups, facilitating 1) large genetic screens carried out as collaborations between multiple laboratories; 2) collaborative research projects that require shared use of specific genetically marked or mutagenized animals; 3) development and distribution of resources and new technologies that advance the research efforts of all laboratories on campus; 4) a teaching environment in which the newest technologies and resources are disseminated quickly; and 5) training and experimental support for laboratories wishing to try pilot zebrafish experiments.
5.E. DNA Peptide Facility The DNA Peptide Facility provides researchers with chemical synthesis of custom oligonucleotides and oligopeptides. The facility synthesizes standard DNA/RNA oligos and peptides with multiple purity options, ranging from crude to High Performance Liquid Chromatography. This Core Facility has the ability to incorporate a wide array of specialty modifications, including fluorophore-labeling and functional group derivatization via amino-, thiol-, and modifications compatible with click chemistry. The goal of the facility is to provide quality service with fast turnaround times.
5.F. DNA Sequencing Facility The DNA Sequencing Facility provides DNA sequencing services and employs the latest technologies to generate high quality data with the goal of rapid sample turnaround at competitive prices. DNA sequencing is accomplished with the use of state-of-the-art DNA sequencers and lab robotics such as the Ion Torrent PGM and Proton, the Qiagen Q24 Pyrosequencer, and the Biomek FX for liquid handling needs. Data from standard DNA sequencing services are typically reported to customers the same day as they are run. Sample information can be submitted online and sequencing data files are also available online for download using a simple and secure interface.
5.G. Drug Discovery Facility The Drug Discovery Facility provides compound collections for screening. The facility delivers low-cost and efficient access to chemical libraries for screening, to equipment for automation, and to synthetic chemistry support for the characterization and validation of compounds for potential use as therapeutics, diagnostics and biological tools. Available services include the following: high-throughput screening, small molecule chemical libraries, pooled CRISPR-Cas9 libraries, assay development, consultation on target identification/validation, hit to lead optimization, and chemical support for drug discovery.
5.H. Electron Microscopy The Electron Microscopy Facility utilizes transmission electron microscopy and scanning electron microscopy imaging to determine cellular structures, the morphology of biological macromolecules, the three-dimensional structures of biological macromolecules, and the size and structure of nanoparticles and other small particles. The Electron Microscopy Facility also prepares specimens for the microscope.
5.I. Flow Cytometry Facility The Flow Cytometry Facility offers quantitative, multiparameter fluorescence analysis, and cell sorting services that assists investigators. The expertise and instrumentation to perform most flow cytometric assays that have been described in the literature are available within the expertise of the collective personnel and the physical resources of the Flow Cytometry Facility. The facility offers investigators the entire spectrum of cytometric experiment management, if desired, all the way from initial design consultation to the creation of graphics for publication.
5.J. Genomics Facility The Genomics Facility offers a variety of genetic analysis services including full service genotyping, from PCR setup through analysis, and assistance to researchers performing genotyping projects. The facility has commercial and custom sets of fluorescently labeled microsatellite markers that can be used for whole genome linkage studies and fine mapping projects. Researchers can select genes or regions of interest and the facility designs and optimizes the PCR primers, performs the initial PCR, runs the sequencing reactions, and analyzes the data using SoftGenetics Mutation Surveyor software.
5.K. Machine Shop The Machine Shop Facility is equipped with a full complement of lathes, drills, mills, welders, and grinders, staffed by experienced machinists and engineers capable of turning an idea into reality. The Shop Staff provide consultation to assist with the design process for products ranging from precise surgical instruments to large- scale testing equipment. They also fabricate repair devices and parts made from carbon-steel, stainless steel, brass, copper, plastics, and other materials depending upon the requirements of design specifications.
5.L. Mass Spectrometry and Proteomics The Mass Spectrometry & Proteomics Facility is geared toward supporting proteomics research as well as providing basic mass spectrometry (MS) support for a broad range of research and sample types, such as polymers, natural products, small synthetic molecules, peptides, large intact proteins, and nucleic acids. The facility is equipped with several high- performance mass spectrometers, including a state-of-the-art FTMS instrument (LTQ-FT; ThermoElectron) with nano-LC and nano-ESI ionization, and a state-of-the-art Maldi/ToF/ToF instrument (UltrafleXtreme; Bruker Daltonics) with tissue-imaging capabilities. LC/MS/MS instruments in the lab are equipped with nano-LC for ultimate sensitivity and chromatographic performance. The mission of this facility is to provide the highest quality mass spectrometry analyses for protein and other biomolecule investigations. 5.M. Metabolic Phenotyping The Metabolic Phenotyping Facility offers several services to help investigators evaluate metabolic phenotypes in multiple model organisms. Services include mitochondrial bioenergetics (respirometry for tissue and isolated mitochondria, Seahorse XF24 and Seahorse XFe96 for cells, isolated mitochondria and tissue slices), determination of whole animal energy expenditure using the Columbus Instruments Oxymax Lab Animal Monitoring System, determination of body composition by NMR and determination of circulating metabolite and hormone concentrations using the multiplexing technology (MAGPIX and Luminex 200). The facility also offers services on more complex projects that require detailed in vivo metabolic phenotyping such as glucose and insulin tolerance tests and glucose clamps. In addition, the facility offers protocol consultation and data analysis as needed.
5.N. Metabolomics Facility The Metabolomics Core Facility provides analysis of metabolites found within a tissue, biological fluid, whole organism, culture, or other biological source. Currently metabolomics is a comparative science; the facility analyzes the differences found between biological samples that have been subjected to a treatment such as a genetic mutation, drug treatment, etc. To maximize the number of metabolites observed, the facility is equipped with three chemical analysis platforms, GC-MS, LC-MS, and NMR. The primary mission of the facility is the metabolomics profiling of biological samples including serum, urine, tissues, D. melanogaster, C. elegans, yeast, and bacteria. The following metabolites can be analyzed from many biochemical pathways: amino acids, TCA cycle intermediates, organic acids including lactic acid and pyruvate, carbohydrates, nucleotides, lipids including sterols, di- and tri- peptides including glutathione, full lipid profiling by LC-MS, stable isotope label flux analysis by GC-MS.
5.O. Mutation Generation & Detection (MGD) Facility The MGD Core Facility specializes in providing customized engineered DNA nucleases in either the TALEN or CRISPR-Cas9 formats. These DNA nucleases are cutting edge technologies used to perform targeted genomic engineering that modifies a specific genomic region of interest. The system works in multiple model systems, including D. rerio, D. melanogaster, C. elegans, P. falciparum, S. cerevisiae, T. castaneum, mammalian cell lines, A. aegypti, and M. Musculus. The MGD Core also offers services to identify induced genomic modification using High Resolution Melt Analysis (HRMA). Our support includes hardware, reagents, and expert advice for optimizing and performing HRMA. Beyond these two main services the MGD Core has a partnership with the Mouse Transgenic Facility to create engineered mouse models using CRISPR DNA Nucleases, provides custom HRMA genotyping services, custom CRISPR validation services, and custom donor molecule services. To date the MGD Core has helped further the research of over 100 different laboratories around the world by providing more than 525 unique TALEN and CRISPR reagents.
5.P. Nuclear Magnetic Resonance (NMR) Core Facility This NMR core facility offers services, expertise, and collaboration for the research community at the U of Utah, other Utah academic institutions, and for-profit companies. Our staff has significant experience in characterizing small molecules, natural products, nucleic acids, carbohydrates, and proteins using NMR. Our preferred business model is for users to become skilled and independent users of the NMR facility. We train new users, or help experienced but out-of-practice users to brush up their skills, with the goal of user independence. On a limited basis, we will also record and analyze NMR data for a staff service charge. We provide convenient access to five high field NMR spectrometers (400, 500, 600, 800, and 900 MHz instruments; see Equipment below) located on the U Health campus and the University of Colorado-Boulder and -Denver campuses. The 600, 800, and 900 instruments are equipped with state-of-art cryogenic HCN probes that provide maximum sensitivity. The 800 and 900 are state-of-art NMR consoles while the 400, 500, and 600 are older but still fully capable for all NMR requirements. The facility has several Linux workstations and a considerable number of implemented NMR software programs for data processing, data analysis, and structure calculation.
5.Q. Small Animal Imaging Facility The Small Animal Imaging Facility extends the benefits of modern diagnostic medical imaging systems to the studies of anatomy and physiology in small animals. The facility operates an MRI scanner, FMT scanner, and a CT/SPECT/PET scanner. The scanners are equipped with supporting and monitoring hardware that allows a wide variety of imaging experiments, including longitudinal studies, to be performed on live animals and specimens. Imaging scientists, full-time imaging personnel, and animal support technicians are available for technical consultation and experimental assistance.
5.R. Small Animal Ultrasound Facility The Small Animal Ultrasound Facility has two state-of-the-art VisualSonics 2100 ultrasound machines capable of imaging mice, rats, and other animal models with excellent spatial and temporal resolution. The facility has probes that cover the spectrum from 9-70 MHz (standard human clinical ultrasound covers the spectrum from 2.5-12 MHz). These machines are capable of real-time 2D imaging as well as a full spectrum of Doppler techniques (pulsed- wave, color, tissue, power). One of the two machines is also capable of 3D imaging and contrast imaging (both targeted and non-targeted). Software is available for advanced image analysis of cardiac mechanics with speckle tracking that allows analysis of strain and strain rate. These tools allow near histologic resolution imaging of live animals, and are well suited to challenging applications such as resolving the rapid heart rates of mice, or the microscopic size and function of early and mid-gestation embryos, and everything in between. The facility has long been an extremely important tool in the practice of clinical medicine because it offers real-time imaging providing understanding of anatomy and physiology, is non- invasive, and can be repeated serially.
5.S. Utah Nuclear Engineering Facility The Utah Nuclear Engineering (UNE) Facility is the only nuclear research reactor in the State of Utah, and one of the few in the Intermountain West area. We offer a number of unique, non- destructive testing techniques for analyzing chemical composition of a wide variety of samples. UNE has been at the forefront of establishing safety culture and practices, already implemented at large scale commercial power plants, in a research reactor environment. UNE also allows students from the University of Utah, as well as other local universities, to train for and obtain a Reactor Operator license from the Nuclear Regulatory Commission.
UNE provides equipment and services used for alpha, beta, gamma and neutron radiation detection, irradiation of material samples to study various effects of various types of radiation, and neutron activation analysis techniques (nondestructive technique to find a sample elemental composition). UNE maintains a 7,500 sq. ft. nuclear engineering and radiochemistry facility, including a fully operable 100 kW TRIGA Mark-1 nuclear reactor, 3 High Purity Germanium gamma detectors, liquid scintillation counting, and alpha spectrometry.
5.T. Scalable Analytics & Informatics The U of Utah Center for Scalable Analytics and Informatics (USAI) provides support to research and operations groups inside and outside the University of Utah. These services include Annotation and Chart Review, Natural Language Processing, EMR-driven Clinical Trial Recruitment, Analytics and Data Services, and Enterprise Architecture and Application Development. USAI provides multiple services for researchers utilizing electronic medical records. EMR-driven clinical trial recruitment provides the ability to identify patients during an encounter with a healthcare provider that potentially could participate in a clinical trial and could drastically reduce cost and increase recruitment. Annotation products help machines and humans mark-up data for classification. Natural language processing test data to extract structured data to infer concepts that can be understood by machines and humans for further analysis. USAI’s annotation product line focuses on easing the burden and increasing consistency of manual chart review and annotation tasks. While annotation and chart review are time consuming and expensive, they are vital to many part of the research process: data exploration, feasibility, defining study variables, identifying information in text notes, classifying information within a document, at the document level, at the encounter or patient level, and validating study results. USAI provides Enterprise Architecture and Application Development and has developed annotation tools to support natural language processing, which improves outcomes in health services research and reduces the costs to the researcher. Education is also important to USAI and therefore USAI has recruited and trained computer science students.
5.U. Cell Therapy and Regenerative Medicine Program (CTRM) The CTRM at the U of Utah provides the safest, highest quality products for therapeutic use and research. The goal is to facilitate the availability of cellular and tissue based therapies to patients by bridging efforts in basic research, bioengineering, and the medical sciences. The CTRM program also spearheads efforts to assemble the expertise and infrastructure to address complex regulatory, financial, and manufacturing challenges associated with delivering cell and tissue based products to patients. The program mission is to support hematopoietic stem cell transplants and to deliver innovative cellular and tissue engineered products to patients by providing comprehensive “bench to bedside” services that coordinate the efforts of clinicians, researchers, and bioengineers.
5.U.1. Blood & Marrow Collection/Processing Services & Activities: The CTRM Program at the U of Utah provides hematopoietic stem and progenitor cells to the Huntsman Cancer Institute Blood and Marrow Transplant Program and Primary Children’s Hospital in support of treating multiple myeloma, leukemia, lymphoma, aplastic anemia, and other blood disorders. The CTRM has facilitated more than 1700 transplants since 1996. Current activities include collection, processing cryopreservation and infusion of bone marrow, mobilized peripheral blood, and umbilical cord blood. Services are provided 365 days per year to support patient needs.
5.U.2. Product Development & Translational Research: The CTRM program develops new cell therapy products, promotes interaction among multidisciplinary investigational teams, and raises community awareness about the exciting potential of stem cell-based products and therapies. CTRM strives to be the premiere translational program in the Intermountain West, bridging the application of discovery research to clinical trials and commercialization. Services provided to develop and manufacture novel cellular therapy products are described in Table 3.
Table 3. Cell therapy services available through CTRM Bench-to-bedside • Technology transfer translational research • Cell isolation, characterization and purification assistance • Scale-up • Process optimization and validation • Assistance with Investigational New Drug submissions Technical expertise in • Development of standard operating procedures and batch records cGMP manufacturing • Cell expansion, master and working cell bank production • Support of Phase I/II clinical trials Quality Assurance • Vendor qualification • Risk assessment • Product stability Regulatory guidance and • Clinical scale enrichment oversight • CD34 enrichment • T-reg • Other cell depletion
5.U.3. Contract Manufacturing: CTRM also provides a supply of Glial Restricted Progenitor Cells, Mesenchymal Stem Cells Neural Stem & Progenitor Cells through contract manufacturing.
5.U.4. Novel Cellular Therapy Clinical Trial Support: CTRM provides clinical trial support for pharmaceutical companies.
5.V. Utah CCTS Cellular Translational Research Core See Precision Medicine Facilities and Resources.
6. U HEALTH REGIONAL AFFILIATE NETWORK
6.A. U Health Regional Affiliate Network The U Health Affiliate Network comprises a referral network of 18 organizations with signed Affiliation Agreements from Idaho, Nevada, Utah, Wyoming, and Colorado (LOS, Tad Morley). Inclusive of patient referrals from Montana via these affiliates, the Network’s catchment area comprises 10% of the continental United States. U Health is in the process of rolling out Epic Connect, a program to extend the U Health Epic system to physician and hospital partners throughout this vast service region. Specialties represented in the network include cardiovascular care, neurology/neurosurgery, behavioral health, urology, pulmonology, and a growing number of others. Furthermore, Huntsman Cancer Institute, in concert with the Outreach and Network Development initiative, has been working with a number of organizations across the region to provide program management and other services under a co-branded cancer program. The U Health Affiliate network offers education and training services that include on-site/web-based nurse and technician offerings, advanced certification classes, telehealth/ telemedicine services (see Telemedicine Capabilities above), organizational development seminars, and our Commitment to Value Program in which we collaborate with colleagues to improve clinical and patient experience outcomes across the region. Other outreach-based services being extended to the market include Epic LINK (a web-based read-only portal that providers, their office staff, rural hospitals and select community agencies use to access information stored in U Health’s Epic EHR for shared patients) and Third Party Payer services for self-insured organizations via U of Utah Health Plans.
7. INTERMOUNTAIN HEALTHCARE (INTERMOUNTAIN)
Intermountain is a nonprofit health system based in Salt Lake City, Utah, with 22 hospitals (130,000 annual visits), 185 ambulatory clinics (2.6 million annual visits), 59 urgent care/emergency departments (1 million annual visits), a large health insurance plan (750,000 covered lives) with a common electronic health record system across our providers. It is the largest healthcare provider in Utah and southern Idaho, and employs 1,400 primary care and secondary care providers who offer a broad range of services for healthy and ill patients. Many patients are attracted to the Intermountain flagship tertiary care children’s hospital (Primary Children’s Hospital) and flagship adult tertiary care hospital (Intermountain Medical Center) from other states in the Intermountain West.
The Intermountain organization has received numerous awards which include: Most Innovative Healthcare Organizations (ranking #1 in Elite Leadership), Integrated Healthcare Networks to Watch, Top Three in Patient Safety, Best Places to Work in Information Technology, Gallup Great Workplace Award, Microsoft Health Innovation Award, Nation's Best Hospitals for Patient Engagement, Information Technology Innovator Award, Top 25 Healthcare Supply Chain. This CTSA application will leverage the strong existing infrastructure which is as follows.
7.A. Intermountain Hospitals – 22 hospitals Intermountain Healthcare’s system spans the entire state of Utah and extends into Southern Idaho. These facilities utilize a singular electronic medical record, with standard fields.
7.B. Intermountain Ambulatory Clinics – 185 clinics/Intermountain Medical Group In 2014, the Intermountain Medical Group celebrated its 20th anniversary. Its 1,400 Medical Group physicians and advanced practice clinicians are located throughout Utah. They provide care for patients in both primary care and specialty care, including urgent care, and other specialty services. The preceding Chief Executive Officer, Dr. Charles Sorenson, was a founding member of this group and he helped design a consistent practice of evidence-based medicine embedded in the routine care delivery system. Each clinic staff includes: medical assistants, office staff, nurses, and other providers. Most of our facilities have labs on site or closely accessible including radiological services and many of our ambulatory clinics have research coordinators that work with them to ensure patients can be appropriately recruited while maintaining optimal clinic flow. This model has been employed for the 45 clinics that participated in the FACTOR-64 study of diabetics treated across the Intermountain system that was published in the Journal of the American Medical Association.
7.C. Intermountain Instacares/Emergency Departments – 30 Instacares, 8 Kidscares, 21 EDs Intermountain Healthcare utilizes 30 Instacares and eight Kidscares for patients that need quick medical care for non-life-threatening conditions. Many of our clinics are open seven days a week and are equipped with medical assistants, office staff, nurses, and healthcare providers with labs on site. (same with emergency departments (EDs)). ED capabilities are listed below in the UH3 phase. Intermountain Healthcare has conducted research studies in the Instacares and EDs, and have made certain to maintain a clear clinical workflow to ensure optimal care continues to be delivered in a timely manner.
7.D. Clinical Programs & Specialties 7.D.1. Cardiovascular: The Intermountain Heart Institute consists of a network of clinical heart services and a team of a dozen academic cardiologists and cardiothoracic surgeons, a molecular biologist, and three epidemiologists. The Heart Institute performs over 15,000 heart catheterizations per year and more than half of the open-heart procedures performed in the Intermountain West. The program is one of the few medical centers in the nation licensed to implant mechanical assist devices and total artificial hearts. Measured by volumes and outcomes, Intermountain’s cardiovascular program is a national leader in heart services and is routinely recognized for advancing cardiac research and high quality clinical care.
Cardiovascular research resources include a clinical trials coordinator group, regulatory specialists, physician assistants, genetic counselors, statisticians, and bioinformaticists. To make research practical and less expensive, many research resources are integrated as adjuncts to clinical care processes. Cardiovascular’s DNA and plasma biobank is housed at LDS Hospital, which is ten miles from the flagship hospital Intermountain Medical Center, and is supported by various capabilities including automated DNA extraction and targeted next generation sequencing. The research clinic space at Intermountain Medical Center is adjacent to outpatient cardiac and chest clinics and is where participants for the proposed studies will be enrolled and will have their follow-up visits. Currently, there are over 100 individual research projects.
7.D.2. Pulmonary/Critical Care: Intermountain Medical Center’s pulmonary critical care program is nationally recognized for its Shock/Trauma and Respiratory Intensive Care Unit’s care for severely traumatized patients. The hospital operates five 24-bed intensive care units, which treats many of the area’s most critical patients. The C. DuWayne Schmidt Chest Clinic contains the state-of-the-art equipment needed to perform the necessary tests and protocols for accurate diagnoses of pulmonary conditions. The division offers specialized treatment for patients with sub-acute and chronic pulmonary conditions on an outpatient basis. The Chest Clinic provides treatment for acute respiratory distress syndrome, asthma, bronchiectasis, chronic cough, chronic obstructive pulmonary disorder, emphysema, and interstitial lung disease.
7.D.3. Oncology: Intermountain’s oncology team is the largest, most in-depth network of leading cancer specialists in the state of Utah. A collaborative team approach to care is used when providing support for patients through each step in the 22 hospital network. Intermountain Cancer Centers provide more cancer screening and treatment services than all other health systems in Utah combined. These centers treat all cancer types from detection and diagnosis to treatment and survivor support. Intermountain physicians specialize in every major cancer type, as do nurses, social workers, dietitians and many other cancer experts. Each of these experts come together to determine the best treatment for each individual cancer diagnosis. The cancer team is heavily involved in research and clinical trials to find new treatment options and technologies for cancer care. Intermountain patients can choose to be part of one of the 42 open clinical trials that are saving lives and improving cancer care across the world. This multi-disciplinary approach ensures each patient is being treated with the latest evidence-based protocols providing the best outcomes. It also allows patients to see their entire team of clinicians at the same time in one location.
7.D.4. Maternal Fetal Medicine: Intermountain’s Maternal Fetal Medicine department delivers approximately 30,000 babies annually, employs a staff of fifteen RN researchers, seven research assistants and two research chart abstractors with offices in the five largest Intermountain hospitals along the Wasatch Front (McKay-Dee, LDS Hospital, Intermountain Medical Center, Utah Valley Regional Medical Center and Dixie Regional Medical Center). Intermountain operates over 100 inpatient and outpatient clinics in total for obstetrics and gynecologic visits and each office includes dedicated computers, phones, and fax and copy machines. Intermountain also employs administrative staff to oversee these operations and provides comprehensive research support.
7.D.5. Neonatal Intensive Care Unit (NICU): Intermountain’s NICU provides care for newborns with a broad range of maladies (blood/respiratory/gastrointestinal disorders, birth defects, low birth weight, etc.) in nine locations (Cassia Regional Medical Center, Intermountain Labor & Delivery, Intermountain Maternity, Intermountain Newborn Intensive Care Unity, LDS Hospital, McKay-Dee, Riverton, Special Care Nursey, and Utah Valley Regional Medical Center). The state of the art facilities are equipped with mechanical ventilators, oxygen, medications, and supplies for medical care. There is also technology to monitor nearly every system of a baby's body including body temperature, heart rate, breathing, oxygen and carbon dioxide levels, and blood pressure.
7.D.6. Pediatrics: Intermountain’s privately owned Primary Children’s Hospital is considered one of the highest ranked children hospitals in the western United States. Primary Children’s Hospital, located adjacent to U Health, was recognized in seven specialties in U.S. News & World Report’s 2015-16 Best Children’s Hospitals rankings and named Top Performer on Key Quality Measures by The Joint Commission. The 289- bed hospital is equipped and staffed to care for children with complex illnesses and injuries. The 3,400 hospital staff attend to approximately 40,000 emergency department visits and14,200 inpatient admissions annually. These individuals conduct 2.8 million laboratory tests and 11,000 outpatient surgical procedures. U Health Department of Pediatrics faculty practice at Primary Children’s Hospital.
7.D.7. Surgical Services: Intermountain employs 571 physicians who operate in 46 facilities and perform specialized procedures in the following areas: general surgery, same day surgery, bariatric surgery, cardiovascular, ophthalmology, orthopedics, otolaryngology, pediatrics, podiatry, and gynecology.
7.D.8. Internal Medicine: Intermountain's internal medicine physicians are trained to treat a large variety of conditions, which include: arthritis and joint problems, allergies, anemia, diabetes and thyroid disease, depression, heart disease and hypertension, infections, gastrointestinal problems, lung problems (i.e. asthma or emphysema), kidney disease, neurological problems (i.e. strokes or seizures), nutritional problems, and skin disease. In fact, in 2015, over 55,000 individuals across a wide age spectrum visited the outpatient clinics at our flagship hospital, Intermountain Medical Center.
7.D.9. Orthopedics: Intermountain employs 24 orthopedic surgeons at six locations. The Orthopedic Specialty Hospital (TOSH) is one of the country’s premier orthopedic facilities with specializations in: orthopedic surgery, sports medicine, physiology, biomechanics, physical therapy, and orthopedic and sports medicine research. TOSH is more than 100,000 square feet with 36 inpatient orthopedic units, ten surgical suites, employs a medical staff of 147-members and over 400 employees, a five-lane therapeutic pool, and the standard radiographic imaging equipment required for in-house orthopedic care. In 2011, 249 total hip arthroplasties, 634 total knee arthroplasties, 366 ACL reconstructions, and 863 meniscus and/or meniscectomies were performed at TOSH.
7.D.10. Emergency Medicine Department: Intermountain has 21 emergency departments which operate 24 hours a day, 7 days a week and provides care for approximately 380,000 annual patient encounters. The emergency departments at four Intermountain Hospitals, LDS Hospital, Intermountain Medical Center, McKay- Dee Hospital and Utah Valley Regional Medical Center have a cumulative annual patient volume of over 200,000 patients.
7.D.11. Screening Clinics: Intermountain offers a broad array of imaging, diagnostic and screening options for patients treated within our 22 hospitals, 185 ambulatory clinics, and 59 urgent care/emergency departments. These include but are not limited to: angiography, Bone DEXA, CT Scans, diagnostic imaging, emission imaging, fluoroscopy, mammogram, MRI, myelography, nuclear medicine, PET scan, reflection imaging, transmission imaging, ultrasound, and x-ray. Many of these services feature a 24 hour a day, 7 days a week hotline to provide care for the 800,000 patients who are treated annually.
7.D.12. Family Practice: Intermountain’s Medical Group is the first point of contact for many patients seeking medical care. This group includes 344 Primary care physicians, 506 secondary care providers, and 292 advanced practice clinicians that contribute to staffing a diverse group of clinics and services including primary care clinics, specialty clinics, and urgent care clinics.
7.E. Core Services Provided by Intermountain 7.E.1. Office of Research: Intermountain houses a centralized Office of Research which provides a number of support services for internal researchers such as grants & contracts management, accounting, support for crafting and submitting grant proposals, and statistical consultation. The Office of Research is also home to Intermountain’s IRB that reviews research protocols in order to protect potential research participants and ensure research best practices.
7.E.2. Institutional Review Board: The Intermountain IRB reviews research involving before the studies are conducted to ensure individual rights and welfare are protected, potential risks are minimized and that there are benefits to the individual participants and to their community. The IRB is responsible for the review and approval of applications to conduct clinical research, continuing review of approved protocols, monitoring of safety information, and assuring and facilitating the ethical conduct of research.
Intermountain has two IRB committees and a Privacy Board. Each committee meets monthly. The IRB has two IRB chairs, a full-time IRB Administrator (LOS Shelby Moench) and 5 full-time staff members. The Intermountain IRB is the IRB of record for approximately 850 studies. In 2015, the IRB reviewed 159 initial applications, 500 renewal submissions and 480 amendment submissions.
7.E.3. Institute for Healthcare Leadership: The Institute aims to improve quality and reduce the cost of healthcare services by delivering education, providing technical support, generating/disseminating evidence, and conducting research in support of operational and service excellence and process management across the Intermountain system and with external partners. Strategic priorities are recommended and supported by the Institute leadership regarding healthcare delivery, clinical epidemiology, and health services/outcomes research based on community, clinician, and administrative needs. The Institute is home to Dr. Brent James’ advanced training program (ATP) class which started in 1992 and has graduated over 5,000 healthcare leaders from around the world (LOS Dr. James). Resources at the Institute are available to provide data, statistical analyses, multidisciplinary research design, dissemination, and coordination to internal and external healthcare delivery and clinical research efforts that advance Intermountain's strategic goals and attainment of mission critical objectives.
7.E.4. Clinical Genetics Institute: In 2005, Intermountain Healthcare founded the Clinical Genetics Institute, an organization designed to orchestrate internal efforts in applying genetics/genomics to improve the quality of health for its patients. The Clinical Genetics Institute works to coordinate clinically-relevant genetics educational efforts, for both system-wide internal, and community-based efforts. The staff of the Clinical Genetics Institute includes a board-certified physician in medical genetics, a genetics counselor, and a senior clinical analyst with clinical laboratory experience. The Clinical Genetics Institute has taken a lead role in developing Intermountain’s centralized, strategic plan for gathering family health history data and integrating it into the electronic health record, along with pertinent genomic lab data.
7.E.5. Intermountain Homecare: Intermountain developed a strong homecare program to help patients heal and recover. Our Homecare program offers compassion and clinical excellence to get the same care at home. Patients work with their healthcare providers to develop a personalized plan of care specifically tailored to their needs. These services are available for emergencies, questions, or concerns 24/7 and patients can arrange personalized services depending on their needs.
7.E.6. Homer Warner Center for Informatics Research (HWCIR): The Homer Warner Center for Informatics Research (also referred to as Homer Warner Center) is a world-class research facility dedicated to the discovery and implementation of innovative information technologies for the improvement of clinical care (LOS Dr. Narus). The Homer Warner Center is focused on the pursuit of excellence in research, education, and collaboration in the medical informatics field and translates data, analytics, informatics, and medical model development into improved healthcare for Intermountain patients. The Center enhances Intermountain’s brand and is considered one of the eminent Medical Informatics centers in the world. In 2012, the Center was a big part of why Intermountain earned the top spot among large hospitals in the "Where to Work: BEST Hospital IT Departments" program for the second year in a row.
The HWCIR is a specific location where clinicians with research questions can be directed and where research can be synthesized from available data and analytics. It employs over 70 people, many of whom are trained medical informaticists and are experts in the study of information flow in the healthcare setting. Together with the Office of Research, the informatics researchers at HWCIR are at the forefront of IRB-approved patient studies at Intermountain.
Much of the Homer Warner Center’s work focuses on Intermountain clinical operations support which includes (but is not limited to): activities focused on Cerner, Clinical Program Board Goals, Decision Support, Adverse Event Alerting, Knowledge Management, Clinical Support & Development and Terminology. Terminology comprises approximately 30% of all efforts due to a heavy focus on development of the Health Data Dictionary. The team’s efforts to standardize medical language are critical to Intermountain’s system-wide communication and understanding of medical data. Terminology enhances the value of Intermountain data and the ability to use it for research, cost management, and high-quality patient care.
7.E.7. Enterprise Data Warehouse (EDW): The Intermountain EDW contains data capturing more than 23 years of patient care experience with volumes increasing steadily over time. It has surpassed one million patients and three million clinical encounters for each of the last five years. It is the repository into which the majority of the inpatient and outpatient, clinical data flow from Intermountain facilities and participating providers. Its contents represent the electronic documentation of approximately half the medical care delivered in the state of Utah.
Historically, the EDW’s development has focused on acquisition of new data sources and the creation of data marts and registries for specific diseases or patient populations. For instance, there are data marts used to track diabetic patients, data marts devoted to intensive care patients, data marts to track the course of oncology patients, and a variety of others. This approach has allowed Intermountain to make important strides in targeted quality improvement and the EDW itself has been recognized as a key contributor to Intermountain’s role as a leading healthcare innovator in the United States.
7.E.8. Clinical Information Systems: Intermountain has an established legacy of excellence in building and using clinical information systems. Intermountain is recognized as pioneers in developing innovative information technology applications to improve the quality of care by improving access to information, streamlining and standardizing processes, and providing timely decision support to caregivers at the point-of- care. The HELP system was deployed in 1967 at LDS Hospital, and it continues to be used heavily in inpatient environments. In recent years, a web-based system was built to complement this software, called HELP2. Nearly 15,000 unique users access HELP2 each month. Intermountain has also released a patient portal application targeted at informing and empowering patients, called MyHealth. To date, more than 65,000 patients have registered to use the patient portal. In 2016, Intermountain began the transition to the Cerner electronic health record.
7.E.9. Knowledge Management: In 2000, Intermountain augmented the infrastructure of the HELP and HELP2 systems with an extensive Knowledge Management system. This system manages the authoring, review, and versioning of clinical knowledge assets throughout the corporation. Currently, the system manages over 16,000 unique knowledge assets (75,000 in total), consisting of artifacts of 114 unique knowledge types, ranging from order sets to clinical decision support rules. The Knowledge Management system provides web services and applications that facilitate the full knowledge management lifecycle; including authoring, review, context-sensitive delivery, automated feedback, and versioning.
7.E.10. Intermountain Health Answers: Intermountain Health Answers was approved in 2014 and implemented in 2015 to fill two primary services: system-based, post-discharge calling and in-bound nurse advice for SelectHealth and uninsured patients. The Clinical Communication Center is a 24-hour, seven days per week call center that employs 19 registered nurses who provide support and advice to patients and families across the system. Registered Nurse advice services are provided to patients recently discharged from the inpatient and ED settings. Patients receive an automated call 24-28 hours after discharge asking 7-8 questions about their health and follow-up issues/concerns. Depending on the answers selected, a nurse calls the patient back. On the inbound side, nurse advice services are offered to SelectHealth and self-pay patients.
7.E.11. CV DNA Lab: Research taking place at the Intermountain Heart Institute is making personalized care for every heart patient a possibility. Twenty years ago, the team began collecting DNA from cardiac patients, searching for the inherited, genetic factors that cause heart disease, and the research laboratory has one of world’s largest cardiovascular DNA and plasma bank repositories, which includes samples from more than 30,000 consenting patients. They have an extensive collection of computerized health data, first pioneered by physicians and scientists beginning in the 1950s.
7.E.12. Intermountain BioRepository: The BioRespository team, located in Intermountain’s LDS Hospital has one of the largest repositories of paraffin tissue blocks in the Western United States (>4 million samples). Cancer researchers have used these tissue blocks to study the DNA of patients who were treated at Intermountain over the last 25 years. The BioRepository team also has the ability to safely store and track fresh frozen tissue samples. DNA and RNA extracted from the fresh frozen tissue samples are helping clinicians and researchers analyze genetic profiles of many diseases and the phenotypic outcomes of diseased tissue. Informaticists and software engineers from the Homer Warner Center supplied the BioRepository team with tools to assist in consent tracking and clinical study data capture. In conjunction with the National Cancer Institute’s Cancer Biomedical Informatics Grid community, the Homer Warner Center has also provided the implementation and training of an open-source biorespository software tracking tool used to manage the collection, storage, and supervision of biospecimens.
7.E.13. Intermountain Communications: Intermountain has 137 communications professionals across its enterprise, in virtually all specialty areas: Public relations, media relations, traditional advertising, digital marketing, internal communications, web / mobile design and development, social media, graphic design, video production, and other domains. Intermountain Communications regularly designs and executes advertising and marketing campaigns to all audiences, including physicians, employees, patient groups, national influencers, and the general public. Over the past several years, Intermountain Communications has become increasingly consumer-centric, and has developed capabilities to target specific groups using emerging channels. The team utilizes social monitoring and targeting technology, web analytics, AB testing software, mobile targeting and others, to reach audiences in the most effective way. Intermountain Communications’ goal is to help people live the healthiest lives possible by giving audiences meaningful content in the way that best enables them to engage in their own healthcare.
7.E.14. Transformation Laboratory: Intermountain Healthcare recognizes that in order to transform healthcare, good ideas must become tangible, validated realities. Located adjacent to Intermountain Medical Center, the Transformation Lab consists of experienced professionals, who understand the complexities of the healthcare industry, and collate and utilize cutting-edge technologies. The Transformation Lab houses a patient room, a video studio, a laboratory dedicated to testing sensor technology and a 3-D printer. The Transformation Lab has partnered with several businesses to test various devices, sensors and other technologies on patients within Intermountain Healthcare. In addition, the Lab has led the Innovation Hub – where employees may submit their ideas for innovation funding.
7.E.15. SelectHealth: SelectHealth is Intermountain’s insurance division, serving more than 750,000 members in Utah and Idaho by providing access to high-quality care. SelectHealth offers insurance for individuals and their families, small employers, and large businesses. As a highly efficient not-for-profit health plan, SelectHealth offers competitive premiums; administrative expenses average between 9% and 10%, compared to the national average of about 9.5%. SelectHealth gives members access to the clinically excellent care provided by Intermountain and has received high accreditation status from the National Committee for Quality Assurance. With more than 5,000 physicians and practitioners on the network panels of SelectHealth, plan members have a wide choice among the region’s leading physicians.
SelectHealth consistently receives high healthcare satisfaction scores among Utah HMOs, according to the Consumer Satisfaction Report of Utah Health Plans, issued by the Utah Department of Health, and ranks as the overall leader among similar Utah health plans in terms of the Healthcare Effectiveness Data and Information Set metrics. Performance on these metrics is measured annually by the Utah Department of Health. Additionally, SelectHealth consistently receives local and national awards for its quality care, member service, and workplace culture. For example, in 2013, SelectHealth was named one of Utah Business magazine’s “Best Companies to Work For” for the sixth straight year.
8. VETERANS AFFAIRS SALT LAKE CITY HEALTHCARE SYSTEM (VA)
8.A. Veteran’s Affairs Salt Lake City Health Care System (VA) The VA consists of the George E. Wahlen Department of Veterans Affairs Medical Center (VAMC) and Community Based Outpatient Clinics in Utah, Idaho, and Nevada. Our mission is "to serve the veteran who served us." The VA is committed to providing patients with the highest quality of care in a safe environment. The VAMC is a mid-sized affiliated tertiary care facility with 121 authorized active beds. It is a teaching facility, providing a full range of patient care services, with state-of-the-art technology as well as education and research. Comprehensive healthcare is provided through primary care, tertiary care, and long-term care in areas of medicine, surgery, psychiatry, physical medicine and rehabilitation, neurology, oncology, dentistry, and geriatrics. The Salt Lake City VA is part of the VA Network 19, which includes facilities in Utah, Wyoming, Montana, Colorado, Idaho, and Nevada. The VA has a strong partnership with the U of Utah School of Medicine. Over 500 U of Utah residents, interns, and students are trained at the VA each year. Additional Special Fellowship programs affiliated with the U of Utah are ongoing in Ambulatory Care and Medical Informatics Training Programs. Currently, there are over 150 physician residency and fellowship positions funded by the VA through a U Utah-VA disbursement agreement. The Salt Lake City VA participates in the national VA’s Million Veteran Program, a voluntary program which partners with veterans to study how genes affect health (LOS Dr. Gribbin), and includes a large database and growing biobank with over 450,000 specimens.
8.B. George E. Wahlen VA Medical Center (VAMC) VAMC is our affiliated Veterans Medical Center and has three research “laboratories” that collaborate with the U of Utah Department of Biomedical Informatics. The first is the VA HSR&D funded IDEAS center which is a center focusing on patient safety and informatics. The team there has six advanced researchers (MDs, PhDs, and an MS biostatistician), computer support staff, a database administrator, and clerical staff. Since its founding in 2003, the Targeted Research Enhancement Program center has thrived, growing to become a VA Research Enhancement Award Program center, with plans to apply for a VA funded Center of Excellence after the Research Enhancement Award Program funding concludes. Because of its success integrating informatics and health services research, the Research Enhancement Award Program team play a preeminent role in the VA’s first large-scale research informatics initiatives, the second VA “laboratory,” the Consortium for Healthcare Informatics Research and the VA Informatics and Computing Infrastructure (VINCI). Finally, the third “laboratory” is the Salt Lake City field office for the national VHA Office of Information and related resources, which is responsible for VA enterprise-wide terminologies/standards and the national VA EHR interface CPRS. The Department of Biomedical Informatics has faculty representing all three of these units at the VA.
8.C. VA Informatics and Computing Infrastructure (VINCI) VINCI is a new initiative to improve researchers' access to national VA data and to facilitate the analysis of that data while ensuring Veterans' privacy and data security. Researchers will access the data along with the tools for reporting and analysis in a secure workspace. VINCI has two workspaces available to researchers depending on needs: a standard workspace or a development workspace. The standard workspace is provisioned so that each study has its own project site where multiple people can collaborate using a common set of software tools and files. The development workspace is isolated from other virtual machines to allow customization for specific development activities with local administration privileges for software developers, while still providing team collaboration and file sharing activities. This solution provides a single common access point using Remote Desktop Connection to connect from anywhere within the VA network.
9. HEALTHINSIGHT
HealthInsight is a private, nonprofit, community-based organization dedicated to improving health and health care, with offices in four western states: Nevada, New Mexico, Oregon and Utah. HealthInsight also has operations in Seattle, WA, and Glendale, CA, supporting End-Stage Renal Disease Networks in the Western United States. The mission of HealthInsight is to serve as a primary agent in focusing community energy to achieve quality and effectiveness of health care.
9.A. Laboratory Not applicable to HealthInsight
9.B. Animal Not applicable to HealthInsight
9.C. Computer HealthInsight has a robust security, network and storage infrastructure already in place that are compliant with Centers for Medicare and Medicaid Services (CMS) and HIPAA requirements. These networks and infrastructure are being used to reach out to current partners to help provide training, information dissemination and resources. We also regularly employ remote assistance software that allows our staff to provide technical assistance from afar and allows them to be highly available and accessible from any number of locations. No new or additional infrastructure, software or interfaces will be needed for the Utah CCTS partnership, as HealthInsight can utilize currently established and industry trusted mechanisms to support these engagements.
Collaborative meeting with primary care associations, health systems, medical societies, patient and family representatives, community groups, higher education institutions and other community stakeholders mostly occur virtually through conference calls and webinars.
9.C.1. Hardware: HealthInsight has established physical datacenters at each state (Nevada, New Mexico, Oregon and Utah). Additional equipment within the datacenters for sites will be based upon an evaluation of needs for network connections, storage requirements, and application access. These sites will contain no less than a file/print server, a domain controller, a router/firewall, switches, and an internet circuit. Connections to the Healthcare Quality Information Systems (HCQIS) network at these sites will be managed by the establishment of an approved VPN connection.
9.C.2. Networks: HealthInsight has secure LAN/WANs operating between our Las Vegas (NV), Albuquerque (NM), Portland (OR) and Salt Lake City (UT) offices with dedicated, high-speed internet connections. HealthInsight also provides VPN services via a standard IPSEC client as well as a VPN portal to grant access to critical internal resources and applications. A large air-conditioned, humidity/temperature controlled computer room with servers, switches, routers and other equipment is positioned in each office building to support local and remote staff. All employees either have or have access to laptop computers. These computers are protected by an antivirus program as well as local backups of specific file types to a local server.
With disparate states working as a single entity towards shared goals, HealthInsight will utilize the current CMS HCQIS network access and available resources at each of our sites.
9.C.3. Data Storage, Backup, and Access Rights: Each HealthInsight site will utilize an approved backup tape drive for each file/print server as well as one for any needed database servers. We will appropriate the necessary number of backup tapes with a rotation schedule that is sufficient to meet the requirements for offsite storage and data retrieval. Appropriate rights to data are managed through utilizing industry standard file/folder permissions and architecture. These rights begin from a baseline of the lowest level of necessary access for each site’s specific needs. Modification to those rights would be based upon further evaluation, requests, and identified needs throughout the sites.
9.D. Office The HealthInsight Utah office in Salt Lake City is approximately 12,300 sq. feet; with 27 individual offices and 30 cubicles, accommodating 54 current Utah employees; 5 total meeting rooms are available, including a large conference room and various size meeting areas; all standard office equipment including copy machines and multiple printers. HealthInsight Utah has a Board Room that accommodates up to 50 people and three other meeting areas that can accommodate from up to 6-12 people.
9.E. Clinical Not applicable to HealthInsight
9.F. Biohazards Not applicable to HealthInsight
10. COMMUNITY FACES OF UTAH (CFU)
CFU is a partnership among community, university, and health department organizations in Salt Lake City, UT that is focused on improving the health of all Utahans. The group was organized in 2009 and includes the following organizations: Best of Africa, Calvary Baptist Church, Hispanic Health Care Task Force, National Tongan American Society, Urban Indian Center, Utah CCTS Community and Collaboration Core, and Utah Department of Health. The partnership operates on principles of mutual respect, collaboration, equality, and multi-directional learning. The CCTS partnership within the CFU has been a key success in the increase of collaboration and engagement from the Salt Lake City community in clinical and translational research. CFU provides input and feedback for researchers seeking to develop and conduct projects involving diverse communities; participates as a full partner in community-based participatory research projects; recruits community members to participate in research project activities and focus groups; conducts health education workshops and programs for community members, university researchers, and health department employees; and gives presentations at local, state and national meetings to share the CCTS collaborative partnership model. All CFU members are certified (CITI and HIPAA) in conducting human subjects research. Members also serve as CFU representatives on advisory boards for community, university, and department of health research projects and other programs.
11. UTAH DEPARTMENT OF HEALTH (UDoH)
The Utah Department of Health (UDoH) strives to improve the lives of all Utahns and works with partners to create healthy and safe communities and eliminate health disparities as part of a comprehensive public health system. UDoH uses data driven, evidence based interventions to promote healthy lifestyles and behaviors; detect and prevent injury and disease; and improve access to quality health care for all people of Utah including the state’s most vulnerable populations. It also monitors the health of the population by collecting, analyzing and sharing data. Dr. Wu Xu (Utah CCTS Associate Director) will continue to serve as the Associate Director of the UDoH within the Utah CCTS.
UDoH has been a major collaborator with the Department of Biomedical Informatics and Utah CCTS Biomedical Informatics Core in training and research for many years. During the past five years, the collaboration has been further enhanced through cooperative research supported by the CDC-funded Center of Excellence in Public Health Informatics. The UDoH created an Office of Public Health Informatics, and established an informatics program for enterprise-wide and state-wide coordination of information technology efforts. Resources include advanced state health registries and datasets (such as, cancer registry, vital records, controlled substance database, hospital discharge, the All Payer Claims Database, environmental public health tracking, and so forth) as well as new initiatives to develop a statewide clinical health information exchange and other Agency for Healthcare Research and Quality-supported research and development efforts (Table 4).
11.A. Utah All Payer Claims Database (APCD): The Utah APCD is a database with associated analytic processes comprised of inpatient hospital discharge data, including compiled medical and pharmacy claims data, across healthcare insurance providers (payers). The APCD assists in the comparison of health care cost efficiencies and effectiveness statewide from both a cross sectional as well as from more longitudinally-based, disease progression perspective through the application of analytic software incorporating sophisticated risk adjustment and disease progression measurement capabilities. The APCD is populated with health care claims data from insurance carriers (including Medicaid) and third party administrators within the state, consisting of modified medical and pharmacy claims as well as healthcare enrollment data. The APCD receives continuous payer claim submissions, estimated at 50-65 million claims annually. Access to the APCD can be purchased by U Health.
Table 4. Datasets available for research use for Utah CCTS investigators Data Set Description All Payer Claims Data Utah licensed payers and Medicaid report information on their members’ eligibilities and paid medical and pharmacy claims. (The data is in UPDB.) Ambulatory Surgery Records Utah licensed ambulatory surgery centers report information on each outpatient surgery. (The data is in UPDB.) Autism and Developmental Under the Rule R398-10 UDOH collects autism spectrum disorders and intellectual Disabilities Data disability information from providers. (The data is in UPDB.) Behavioral Risk Factor Telephone survey conducted yearly. Collects information on preventive health Surveillance System (BRFSS) practices, risk behaviors, and health care access. (The data is in IBIS-PH) Birth Certificate Birth Certificates are filled out for all births occurring in Utah. (The data is in UPDB and IBIS-PH) Birth Defect The Utah Birth Defect Network (UBDN) tracks all major structural birth defects by collecting information about children born in Utah with birth defects. Once the UBDN receives a report of a birth defect, a UBDN staff member goes out to the reporting facility and collects information from the medical records of the infant and the mother. (The data is in UPDB and IBIS-PH) Birth Defect DNA Samples Utah Birth Defect Network collected cheek cell samples from research participating subjects for DNA extraction for the CDC funded National Birth Defects Prevention Study. Blood Lead Level The Utah Blood Lead Registry (UBLR) identifies Utah residents with elevated blood lead levels and provides risk assessment to limit and remove the risk of lead exposure. It also serves as a data and educational resource for health care providers, local health departments, and researchers. The UBLR also provides blood lead data to national, state, and local agencies to generate statistics and identify high risk areas. (The data is in IBIS-PH.) Breast and Cervical Cancer Utah Cancer Control Program provides breast and cervical cancer screening Screening Database services to women eligible under the Breast and Cervical Cancer Mortality Prevention Act of 1990. This database contains the screening and diagnostic information, along with patient identifiable information, for the period these women were screened through the program. Patients found to have cancer under this Act and who are eligible for Medicaid are transitioned into Medicaid. Those not eligible for Medicaid are navigated into charity care. This database is linked twice yearly to the Utah Cancer Registry. Cancer Registry Data come from the Utah Cancer Registry (UCR), a population-based cancer registry that has served the State of Utah since 1966. The UCR promotes public health in Utah by maintaining cancer data, which makes the monitoring of trends in incidence and mortality as well as the evaluation of prevention and control measures possible. (The data is in UPDB and IBIS-PH.) Communicable Diseases Disease incidence data derived from Utah's National Electronic Telecommunication System for Surveillance (NETSS) database. Allows users to query disease incidence over specified time periods. (The data is in IBIS-PH.) Consumer Assessment of Public Use file-Standardized limited data set CAHPS measures enrollees’ Healthcare Providers and satisfaction with their health plan. The data are collected from surveys administered Systems (CAHPS) annually. Adult surveys are administered in even-numbered years and child surveys are administered in odd-numbered years. Data are available for Medicaid, Commercial and CHIP health plans. Death Certificate Death Certificates are filled out for all deaths occurring in Utah. (The data is in UPDB and IBIS-PH.) Emergency Department Utah licensed hospitals report information on emergency department patient Encounters encounters. (The data is in IBIS-PH.) Fetal Mortality Fetal death certificates are filled out for all products of human conception: (a) of 20 weeks' gestation or more, calculated from the date the last normal menstrual period began to the date of delivery; and (b) that was not born alive. (The data is in IBIS- PH.) Healthcare-Associated Infections Utah licensed hospitals report the Healthcare-Associated Infections to the UDOH. (HAI) UDOH publishes annual reports on hospital performance. Hemp Extract Registry The data come from the Hemp Extract Registration Card and other related information. Health Plan Quality Data and Public Use File- Standardized limited data set HEDIS indicators for Medicaid, Information Set (HEDIS) Commercial, and CHIP health plans in Utah. HEDIS is a report of the quality of care provided by a plan to its enrollees. Immunization Registry The Utah Statewide Immunization Information System (USIIS) collects the immunization histories from providers, health facilities, schools, data care centers, pharmacies. Infant Mortality These data come from the Utah Death Certificate database. Infant Mortality provides the number of infant deaths during a year (regardless of birth year). The number of births in the year is used as a denominator. Modules include infant mortality (age 364 days or less), neonatal mortality (age 0-27 days), postneonatal mortality (age 28-364 days). (The data is in UPDB and IBIS-PH.) Inpatient Hospital Discharges All licensed hospitals in Utah report data on inpatient hospital discharges. There may be a charge for use of the full data set. (The data is in UPDB and IBIS-PH.) Laboratory Data The State Public Health Laboratory conducts tests for infectious disease, forensics / toxicology/chemistry. Data sets for Infectious Diseases, Forensic Toxicology and Environmental Chemistry laboratories are not for external research use/purposes without a GRAMA request or submission to the IRB approval. Medicaid Utilization Data Utah Medicaid and Children’s Health Information Program’s members medical and pharmacy utilization data National Toxic Substance The National Toxic Substance Incidents Program (NTSIP) actively collects Incidents Program information to describe the public health impact of acute hazardous substance releases. NTSIP defines hazardous substances emergency events as acute uncontrolled or illegal releases or threatened releases of hazardous substances. Data is organized by year, county, and substance category. (The data is in IBIS- PH.) Newborn Hearing and Vision Newborn hearing and vision screening and diagnostic tests data Screening Newborn Heart Screening Newborn Critical Congenital Heart Defect (CCHD) Screening using pulse oximetry data Newborn Blood Screening Newborn blood screening data
Parkinson’s Disease Registry UDOH requires persons or organizations to report any Parkinson’s Disease case information under the Rule 384-300. (The data is in UPDB.) Population Estimates The population estimates for years 1980-1999 were produced by the Utah Governor's Office of Planning and Budget (GOPB). For years 2000 and later the population estimates are provided by the National Center for Health Statistics (NCHS) through a collaborative agreement with the U.S. Census Bureau. Prehospital EMS data The prehospital (ambulance) data come from all emergency medical services (EMS) agencies licensed or designated to operate in Utah. Information on this data set can be found here: Bureau of Emergency Medical Services prehospital data. (The data is in IBIS-PH.) Pregnancy Risk Assessment An ongoing, population-based risk factor surveillance system designed to identify and Monitoring System and monitor selected maternal experiences that occur before, and during pregnancy (PRAMS) and the child's early infancy among a stratified sample of mothers delivering a live birth. (The data is in IBIS-PH.) Student Injury Reporting System The Student Injury Reporting System (SIRS) tracks injuries that occur while traveling to and from school and during school time or school-related activities. Trauma Registry The Trauma Registry comes from all acute care hospitals that operate in Utah. Each record represents a trauma patient who sustained an injury and met Utah's Trauma Registry inclusion criteria. (The data is in IBIS-PH.) Utah Violent Death Reporting The UTVDRS is surveillance system that collects detailed facts from different System sources about the same incident. This information is collected from death certificates, medical examiner records, police reports, crime lab records, and supplemental homicide reports. (The data is in IBIS-PH.) Youth Risk Behavior Survey Survey conducted every two years with a sample of 9th-12th grade students. Asks (YRBS) questions about health behaviors that contribute to the leading causes of death, disability, and social problems. (The data is in IBIS-PH.) This dataset is publicly available and support is provided upon request. Note: All research uses of the UDOH data sets must be approved by an IRB IBIS-PH URL: https://ibis.health.utah.gov/ IBIS Data Set Steward List at https://ibis.health.utah.gov/about/DataStewards.html