Complex Care Management Program Overview - Technology

This report provides an overview of technology based complex care management programs, including:Cook County Health and Hospitals System - Computer Assisted Quality of Life and Symptom Assessment of Complex PatientsUniversity of Missouri - TigerPlaceWenatchee Valley Medical Center - Health Buddy -- Patient Telemonitoring Progra

National Mesothelioma Virtual Bank: A standard based biospecimen and clinical data resource to enhance translational research

Background: Advances in translational research have led to the need for well characterized biospecimens for research. The National Mesothelioma Virtual Bank is an initiative which collects annotated datasets relevant to human mesothelioma to develop an enterprising biospecimen resource to fulfill researchers' need. Methods: The National Mesothelioma Virtual Bank architecture is based on three major components: (a) common data elements (based on College of American Pathologists protocol and National North American Association of Central Cancer Registries standards), (b) clinical and epidemiologic data annotation, and (c) data query tools. These tools work interoperably to standardize the entire process of annotation. The National Mesothelioma Virtual Bank tool is based upon the caTISSUE Clinical Annotation Engine, developed by the University of Pittsburgh in cooperation with the Cancer Biomedical Informatics Grid™ (caBIG™, see http://cabig.nci.nih.gov). This application provides a web-based system for annotating, importing and searching mesothelioma cases. The underlying information model is constructed utilizing Unified Modeling Language class diagrams, hierarchical relationships and Enterprise Architect software. Result: The database provides researchers real-time access to richly annotated specimens and integral information related to mesothelioma. The data disclosed is tightly regulated depending upon users' authorization and depending on the participating institute that is amenable to the local Institutional Review Board and regulation committee reviews. Conclusion: The National Mesothelioma Virtual Bank currently has over 600 annotated cases available for researchers that include paraffin embedded tissues, tissue microarrays, serum and genomic DNA. The National Mesothelioma Virtual Bank is a virtual biospecimen registry with robust translational biomedical informatics support to facilitate basic science, clinical, and translational research. Furthermore, it protects patient privacy by disclosing only de-identified datasets to assure that biospecimens can be made accessible to researchers. © 2008 Amin et al; licensee BioMed Central Ltd

The ADVANCE network: accelerating data value across a national community health center network

The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network (CDRN) is led by the OCHIN Community Health Information Network in partnership with Health Choice Network and Fenway Health. The ADVANCE CDRN will ‘horizontally’ integrate outpatient electronic health record data for over one million federally qualified health center patients, and ‘vertically’ integrate hospital, health plan, and community data for these patients, often under-represented in research studies. Patient investigators, community investigators, and academic investigators with diverse expertise will work together to meet project goals related to data integration, patient engagement and recruitment, and the development of streamlined regulatory policies. By enhancing the data and research infrastructure of participating organizations, the ADVANCE CDRN will serve as a ‘community laboratory’ for including disadvantaged and vulnerable patients in patient-centered outcomes research that is aligned with the priorities of patients, clinics, and communities in our network

The Global academic research organization network: Data sharing to cure diseases and enable learning health systems.

Introduction:Global data sharing is essential. This is the premise of the Academic Research Organization (ARO) Council, which was initiated in Japan in 2013 and has since been expanding throughout Asia and into Europe and the United States. The volume of data is growing exponentially, providing not only challenges but also the clear opportunity to understand and treat diseases in ways not previously considered. Harnessing the knowledge within the data in a successful way can provide researchers and clinicians with new ideas for therapies while avoiding repeats of failed experiments. This knowledge transfer from research into clinical care is at the heart of a learning health system. Methods:The ARO Council wishes to form a worldwide complementary system for the benefit of all patients and investigators, catalyzing more efficient and innovative medical research processes. Thus, they have organized Global ARO Network Workshops to bring interested parties together, focusing on the aspects necessary to make such a global effort successful. One such workshop was held in Austin, Texas, in November 2017. Representatives from Japan, Taiwan, Singapore, Europe, and the United States reported on their efforts to encourage data sharing and to use research to inform care through learning health systems. Results:This experience report summarizes presentations and discussions at the Global ARO Network Workshop held in November 2017 in Austin, TX, with representatives from Japan, Korea, Singapore, Taiwan, Europe, and the United States. Themes and recommendations to progress their efforts are explored. Standardization and harmonization are at the heart of these discussions to enable data sharing. In addition, the transformation of clinical research processes through disruptive innovation, while ensuring integrity and ethics, will be key to achieving the ARO Council goal to overcome diseases such that people not only live longer but also are healthier and happier as they age. Conclusions:The achievement of global learning health systems will require further exploration, consensus-building, funding aligned with incentives for data sharing, standardization, harmonization, and actions that support global interests for the benefit of patients

Data Integration and Storage: Managing and Using Home and Community-Based Services Data for Quality Improvement

This paper reports on data integration from a program manager’s perspective. The paper is not meant to be an exhaustive research document, nor does it single out any one correct approach. The paper is meant to facilitate communication between program units and analytic staff and serve as one reference for states as they continue to improve upon data collection techniques and use this information for ongoing quality management and improvement

Regional data exchange to improve care for veterans after non-VA hospitalization: a randomized controlled trial

BACKGROUND: Coordination of care, especially after a patient experiences an acute care event, is a challenge for many health systems. Event notification is a form of health information exchange (HIE) which has the potential to support care coordination by alerting primary care providers when a patient experiences an acute care event. While promising, there exists little evidence on the impact of event notification in support of reengagement into primary care. The objectives of this study are to 1) examine the effectiveness of event notification on health outcomes for older adults who experience acute care events, and 2) compare approaches to how providers respond to event notifications. METHODS: In a cluster randomized trial conducted across two medical centers within the U.S. Veterans Health Administration (VHA) system, we plan to enroll older patients (≥ 65 years of age) who utilize both VHA and non-VHA providers. Patients will be enrolled into one of three arms: 1) usual care; 2) event notifications only; or 3) event notifications plus a care transitions intervention. In the event notification arms, following a non-VHA acute care encounter, an HIE-based intervention will send an event notification to VHA providers. Patients in the event notification plus care transitions arm will also receive 30 days of care transition support from a social worker. The primary outcome measure is 90-day readmission rate. Secondary outcomes will be high risk medication discrepancies as well as care transitions processes within the VHA health system. Qualitative assessments of the intervention will inform VHA system-wide implementation. DISCUSSION: While HIE has been evaluated in other contexts, little evidence exists on HIE-enabled event notification interventions. Furthermore, this trial offers the opportunity to examine the use of event notifications that trigger a care transitions intervention to further support coordination of care. TRIAL REGISTRATION: ClinicalTrials.gov NCT02689076. "Regional Data Exchange to Improve Care for Veterans After Non-VA Hospitalization." Registered 23 February 2016

Norton Healthcare: A Strong Payer-Provider Partnership for the Journey to Accountable Care

Examines the progress of an integrated healthcare delivery system in forming an accountable care organization with payer partners as part of the Brookings-Dartmouth ACO Pilot Program, including a focus on performance measurement and reporting

An informatics supported web-based data annotation and query tool to expedite translational research for head and neck malignancies

<p>Abstract</p> <p>Background</p> <p>The Specialized Program of Research Excellence (SPORE) in Head and Neck Cancer neoplasm virtual biorepository is a bioinformatics-supported system to incorporate data from various clinical, pathological, and molecular systems into a single architecture based on a set of common data elements (CDEs) that provides semantic and syntactic interoperability of data sets.</p> <p>Results</p> <p>The various components of this annotation tool include the Development of Common Data Elements (CDEs) that are derived from College of American Pathologists (CAP) Checklist and North American Association of Central Cancer Registries (NAACR) standards. The Data Entry Tool is a portable and flexible Oracle-based data entry device, which is an easily mastered web-based tool. The Data Query Tool helps investigators and researchers to search de-identified information within the warehouse/resource through a "point and click" interface, thus enabling only the selected data elements to be essentially copied into a data mart using a multi dimensional model from the warehouse's relational structure.</p> <p>The SPORE Head and Neck Neoplasm Database contains multimodal datasets that are accessible to investigators via an easy to use query tool. The database currently holds 6553 cases and 10607 tumor accessions. Among these, there are 965 metastatic, 4227 primary, 1369 recurrent, and 483 new primary cases. The data disclosure is strictly regulated by user's authorization.</p> <p>Conclusion</p> <p>The SPORE Head and Neck Neoplasm Virtual Biorepository is a robust translational biomedical informatics tool that can facilitate basic science, clinical, and translational research. The Data Query Tool acts as a central source providing a mechanism for researchers to efficiently find clinically annotated datasets and biospecimens that are relevant to their research areas. The tool protects patient privacy by revealing only de-identified data in accordance with regulations and approvals of the IRB and scientific review committee.</p

Toward Interagency Collaboration: The Role of Children's Cabinets

Today in our Commonwealth, children and families in need are served by multiple agencies -- Department of Children and Families, Department of Youth Services, Department of Mental Health - as well as by their local public schools. Yet, there is often little or no coordination among the agencies and public school systems.Social workers rarely talk with, or even know, the teacher of the child with whom they are working -- a teacher who may spend as many as six hours each day with the child. Too often the burden of navigating the labyrinth of social services falls on these already struggling families -- or, worse, on the children themselves.In an effort to better align state and local services for children, youth and their families, many states have begun establishing children or youth cabinets. Here in Massachusetts, in October 2008, Governor Patrick signed an executive order establishing the Child and Youth Readiness Cabinet -- a state leadership team focused on streamlining state efforts to improve services for children, youth and families. The Readiness Cabinet is jointly chaired by Paul Reville, Secretary of Education, and Dr. JudyAnn Bigby, Secretary of Health and Human Services, and includes the state secretaries of Administration and Finance, Housing and Economic Development, Labor and Workforce Development, Public Safety and the Child Advocate. The Rennie Center's new policy brief, Toward Interagency Collaboration: The Role of Children's Cabinets, is designed to inform the general public about the purpose of children's cabinets and to highlight the potential role that non-government stakeholders (such as parents, youth leaders, advocacy groups, and service providers) might play as the Governor's Child and Youth Readiness Cabinet begins their work in Massachusetts. It was also written to contribute to the policy dialogue about how to increase the level of collaboration among state departments and agencies that serve Massachusetts children, youth and families by putting forth examples of structures and strategies being used by other states' children's cabinets to carry out their work. The policy brief was the subject of discussion at a public event on June 10, 2009, co-hosted by the Full-service Schools Roundtable

A big data augmented analytics platform to operationalize efficiencies at community clinics

Indiana University-Purdue University Indianapolis (IUPUI)Community Health Centers (CHCs) play a pivotal role in delivery of primary healthcare to the underserved, yet have not benefited from a modern data analytics platform that can support clinical, operational and financial decision making across the continuum of care. This research is based on a systems redesign collaborative of seven CHC organizations spread across Indiana to improve efficiency and access to care. Three research questions (RQs) formed the basis of this research, each of which seeks to address known knowledge gaps in the literature and identify areas for future research in health informatics. The first RQ seeks to understand the information needs to support operations at CHCs and implement an information architecture to support those needs. The second RQ leverages the implemented data infrastructure to evaluate how advanced analytics can guide open access scheduling – a specific use case of this research. Finally, the third RQ seeks to understand how the data can be visualized to support decision making among varying roles in CHCs. Based on the unique work and information flow needs uncovered at these CHCs, an end to-end analytics solution was designed, developed and validated within the framework of a rapid learning health system. The solution comprised of a novel heterogeneous longitudinal clinic data warehouse augmented with big data technologies and dashboard visualizations to inform CHCs regarding operational priorities and to support engagement in the systems redesign initiative. Application of predictive analytics on the health center data guided the implementation of open access scheduling and up to a 15% reduction in the missed appointment rates. Performance measures of importance to specific job profiles within the CHCs were uncovered. This was followed by a user-centered design of an online interactive dashboard to support rapid assessments of care delivery. The impact of the dashboard was assessed over time and formally validated through a usability study involving cognitive task analysis and a system usability scale questionnaire. Wider scale implementation of the data aggregation and analytics platform through regional health information networks could better support a range of health system redesign initiatives in order to address the national ‘triple aim’ of healthcare