F I N A L R E P O R T A P P E N D I C E S Assessing the SHARP Experience JULY 2014 PRESENTED TO: PRESENTED BY: Dustin Charles NORC at the Office of the National Coordinator University of Chicago for Health Information Technology Adil Moiduddin U.S. Department of Health and Human Vice President, Health Care Research Services 55 East Monroe Street 200 Independence Avenue S.W. 30th Floor Suite 729-D Chicago, IL 60603 Washington, D.C. 20201 (312) 759-4000 (202) 690-7151 NORC | Assessing the SHARP Experience Table of Contents Appendix A. SHARP Vision Paper (March 2012) ..................................................................... 1 Appendix B. Awardee Overview............................................................................................. 15 Appendix C. SHARP Output Inventory .................................................................................. 17 Appendix D. Count by Output Type ....................................................................................... 63 Appendix E. Site Visit Summary for SHARPS ....................................................................... 64 Appendix F. Site Visit Summary for SHARPc ....................................................................... 85 Appendix G. Site Visit Summary for SMART ....................................................................... 104 Appendix H. Site Visit Summary for SHARPn ..................................................................... 123 Appendix I. Closing Discussion Participants ...................................................................... 133 Appendix J. Closing Discussion Method ............................................................................ 134 FINAL REPORT APPENDICES | I NORC | Assessing the SHARP Experience Appendix A. SHARP Vision Paper (March 2012) Introduction NORC at the University of Chicago, working under contract to and in consultation with expert staff of the Office of the National Coordinator for Health Information Technology (ONC) at the U.S. Department of Health and Human Services, is pleased to present this paper outlining the basic vision for the Strategic Health IT Advanced Research Projects (SHARP) program. The paper presents the motivation and objectives of the SHARP program both at its inception and in the current context of health care in the United States. It first offers a brief review of the history and mechanics of the program, and the research areas targeted by program funding. The paper then details the anticipated outcomes and benefits to accrue from SHARP in the current environment and reviews the approaches to program management, results dissemination and collaboration that can help extend and accelerate benefits of the program. Program Background In February 2009, President Obama signed the American Recovery and Reinvestment Act of 2009 (Pub. L. 111-5) (ARRA). ARRA included provisions that may, in their entirety, be cited as the “Health Information Technology for Economic and Clinical Health Act” or the “HITECH Act”. The HITECH Act authorized unprecedented investments to advance the use of health IT to improve the quality, safety and efficiency of health care in the United States (U.S.). The HITECH Act authorized a number of programs to strengthen this health information infrastructure and promote the adoption of health IT across the country. These include the Medicare and Medicaid EHR Incentives Program, the Information Technology Professionals in Health Care (“Workforce”) Program, the Beacon Communities Cooperative Agreement Program, the State Health Information Exchange (HIE) Program, the Health Information Technology Regional Extension Center (REC) Program, and the Health Information Technology Research Center (HITRC). In recognition of the challenges inherent in achieving a robust digital health information infrastructure that is effectively used by providers and consumers to improve health and care throughout the U.S., the Office of the National Coordinator for Health IT dedicated significant resources to closing the gap between the promise of health IT and its realized benefits—including its direct contributions to achieving the goal of a transformed health care delivery system. The research infrastructure must be designed and FINAL REPORT APPENDICES | 1 NORC | Assessing the SHARP Experience dedicated to supporting the goals of HITECH and overcoming health IT challenges to adoption and meaningful use. Although not the sole component or program in the U.S. health IT research and development infrastructure, the SHARP Program supports advanced research activities to address key short- and medium-term challenges to the HITECH and its programs. Research includes: Exploring and defining fundamental research questions within an identified set of high-priority areas which address barriers to the nationwide electronic exchange and use of health information in a secure, private, and accurate manner; ■ Providing opportunities for relevant academic and industrial researchers, health IT developers and implementers, health care providers and delivery system researchers, and other stakeholders to collaborate for the purpose of stimulating innovation and translating the results of research into health IT products; ■ Creating breakthrough solutions, technologies, and services, for application to health IT in the near- and long-term, and addressing significant challenges and opportunities relevant to the adoption and meaningful use of health IT; ■ Identifying a range of model (proof-of-concept) systems that serve as motivating and unifying forces to drive fundamental research in health IT; and ■ Encouraging effective use of health IT through rapid dissemination of research results and findings on innovations and novel tools to developers and purchasers of health IT. SHARP focuses on solving currently-known and anticipated challenges to adoption and meaningful use of health IT, through new methods and advanced technologies. These projects focus on areas ripe for “breakthrough” advances. For example, potential security breaches represent a major threat to public trust in the electronic maintenance and exchange of health information. SHARP research in this area seeks to identify new methods to create tools that will, through their incorporation into deployed technology, enhance data security. In doing so, the program will, in critical areas, close the gap between the promise of health IT and its realized benefits. The SHARP Principal Investigators have designed and dedicated the projects to supporting the goals of HITECH, and overcoming health IT challenges to adoption and meaningful use. Thus, SHARP Awardees’ work addresses fundamental research questions aimed at promoting private, secure, and accurate electronic exchange and use of health information by stimulating innovation and translating research into health IT tools and products. This requires collaboration among medical FINAL REPORT APPENDICES | 2 NORC | Assessing the SHARP Experience informaticists, health care researchers, health IT developers and implementers, health care providers, and other stakeholders. These efforts will promulgate the development and dissemination of previously unforeseen tools, products, and methods that will ultimately improve patient outcomes and quality of care, and catalyze additional private-sector investments in health IT. Program Overview The SHARP Program funds four competitively awarded cooperative agreements over the course of four years, each of which focuses on a distinct research domain. Awardees implement collaborative, interdisciplinary research projects that address short- and long-term, well-documented challenges to the adoption of health IT related to four priority domains: ■ Security of Health Information Technology: This research area addresses the challenges of developing security and risk-mitigation policies and the technologies necessary to build and preserve the public trust as health IT systems become increasingly ubiquitous. The project goes beyond the need to establish systems to maintain compliance with legal and regulatory challenges in the current context, and looks for opportunities to incorporate sophisticated methods to define policies that address a more nuanced understanding of the objectives of security policy that may be consistently and effectively employed in the context of EHRs, health information exchange, and telemedicine. ■ Patient-Centered Cognitive Support: This research area addresses the challenge of harnessing the power of health IT to produce clinical decision support models that integrate with, enhance, and support clinicians’ reasoning and decision-making, rather than adding to their workload by offering information at points and in manners not consistent with how clinicians approach decision-making in the context of their daily work. The goal is to develop methods that can be employed to improve the relevance and thus the effectiveness of decision support to facilitate patient-centered care across different health IT tools used by providers. ■ Health Application and Network Platform Architectures: This research area focuses on the development of new and improved architecture to support rapid development and dissemination of substitutable applications that share common basic components. In addition to establishing an environment in which developers can continually design and disseminate new applications, the project envisions a graphical user interface where providers can select and download these applications, similar to “app selection” interfaces used by smartphones and other mobile-computing devices. The project also provides applications that facilitate the capture, storage, retrieval, and analysis of data, scalable up to a national level, while maintaining the security and integrity of data from each particular institution. FINAL REPORT APPENDICES | 3 NORC | Assessing the SHARP Experience ■ Secondary Use of EHR Data: This research area focuses on strategies for linking disparate sets of data generated by EHRs and other tools to allow new monitoring and research capabilities to generate new knowledge in support of quality of care and population health objectives. ONC has emphasized collaboration across disciplines and sectors within individual SHARP portfolios, across the four SHARP portfolios, between SHARP and other HITECH programs, and between SHARP and the health IT community writ large as a strategy for maximizing the benefits from public investment in the program. ONC encourages Awardees to work together and share ideas and practices regarding the design, development, and implementation of their respective projects. Although each domain addresses different areas, all projects revolve around the development and diffusion of health IT innovation and share the following key features: ■ Establishing a Research Agenda: Each project implements a research agenda addressing the specific goals of HITECH, the challenges to adoption and meaningful use that are critical to closing the gap between reality and the promise of health IT, and achieving the goal of a transformed health care delivery system. ■ Using a Multidisciplinary Approach: Each Awardee works with multiple disciplines as appropriate such as health informatics, computer and information science, and health services research, among others. ■ Using Subject Matter Expertise: Addressing the different domain areas within the SHARP program requires advanced subject matter knowledge. Each Awardee develops and implements plans to use internal and external expertise, and help lead nationwide coordination efforts relevant to their research focus. ■ Developing Relationships with Other ONC Programs: Where it is of benefit to overall efficiency and effectiveness of the HITECH program, SHARP Awardees collaborate with other programs making strategic contributions in the same or closely related aspects of health IT, such as the State Cooperative Agreement Programs for Health Information Exchange (HIE) and the Beacon Communities. ■ Generating Short- and Long-Term Results: Each Awardee project generates intermediate products, tools and/or research in addition to making longer-term contributions to the overall field of health IT. ■ Developing Multi-Sector Partnerships: Each Awardee develops partnerships with the vendor community and other private-sector health IT, healthcare, consumer, and other relevant stakeholder organizations to enable the productive exchange of information. Relevant stakeholders that are highly engaged with a project may vary across projects and time, but in general include a variety of FINAL REPORT APPENDICES | 4 NORC | Assessing the SHARP Experience perspectives such as those of healthcare professionals and/or their associations, hospitals and other organizational providers of health services (e.g. home health agencies, community health clinics) and/or their associations, consumers and consumer organizations, and/or federal, state, and local government entities. ■ Demonstrating an Institutional Commitment to the SHARP Program: Each Awardee demonstrates institutional commitment to the project by making equipment, facilities, and laboratory space available to the Project’s activities. This is significant because it shows the Awardee institution or organization, and not merely the Principal Investigator or project team lead, is committed to the project and its success. ■ Conducting an Internal Project Evaluation: Each Awardee uses formative and summative evaluation strategies to conduct (at a minimum) an annual evaluation to measure and report on progress toward achieving its mission and goals. This provides for and informs adjustment of project plans and activities based on the observed progress and contributing factors, thus increasing probabilities of achieving success on project objectives. ■ Using a Project Advisory Committee (PAC): Each Awardee forms a multi-stakeholder project advisory committee (PAC), including members of industry and representatives of professional organizations and institutions. The PAC meets regularly (typically quarterly) to help align the work of the Project with external concerns and interests. SHARP Awardees and Research Domains As described above, for each of the four domain areas, ONC awarded funding to an academic institution representing a collaborative research group to conduct a four-year interdisciplinary research project. The projects address short- and long-term challenges within the domain area, and forge partnerships among researchers, patient groups, health care providers, and other health IT stakeholders to translate the results of their research into practice. Through these dedicated research teams, the SHARP program will work toward specific aims in each area, which include: ■ Address strategic crosscutting themes that foster collaboration, consistency, and a multi-purpose technology convergence of EHR, HIE, and telemedicine. ■ Develop security functions, policies and technology tools that will facilitate increasingly widespread, rapid, and sophisticated, electronic use and exchange of health information while assuring and enhancing individuals’ safety and privacy. FINAL REPORT APPENDICES | 5 NORC | Assessing the SHARP Experience ■ Address the cognitive challenges in health IT, focusing on work-centered design, cognitive foundations for decision-making, adaptive decision support, model-based data summarization, visualization, and distributed teamwork. ■ Develop, test, refine, and disseminate models for CDS that are consistent with providers’ natural cognitive reasoning processes. ■ Establish a series of pipelines using a powerful computing engine (UIMA) and state of the art techniques from natural language processing and data normalization to translate “real world” EHR data into clinical element models (CEMs) representing clinical concepts that can be grouped together by patient to support secondary uses ranging from quality measurement and health information exchange to disease surveillance and genomics research. ■ Assemble modular services and agents from existing open-source software to improve the utilization of EHR data for a spectrum of use-cases. ■ Develop a user interface that will allow “iPhone-like” substitutability for medical applications based upon shared basic components and a set of services that enable efficient data capture, storage, and effective data retrieval and analytics, which will be scalable to the national level but nonetheless respectful of institutional autonomy and patient privacy. Programs anticipate that their work will ultimately: ■ Improve the maturity of security and privacy technologies and policies to remove a key range of security and privacy barriers that prevent current health IT systems from moving to higher stages of meaningful use. ■ Create an integrated multidisciplinary research community in security and privacy for health IT. ■ Deliver short-term patient-centered cognitive support tools within the first two years and longer-term breakthroughs in four years, and translate them into real-world health care settings through an elaborate and coordinated effort. ■ Make artifacts available to the community of secondary EHR data users manifest as open-source tools, services, and scalable software. ■ Develop foundational knowledge and useable, testable prototypes for a national-scale SMArt platform with a burgeoning ecosystem, robust and scalable network data services, and advanced data analytics. ■ Bring together researchers, industry partners, clinicians, and other stakeholders to lay the groundwork necessary to enable a tectonic shift to a flexible health IT environment that includes SMArt platform architecture. FINAL REPORT APPENDICES | 6 NORC | Assessing the SHARP Experience The following sections present a description of each program, its affiliated organization and research domain. Security of Health Information Technology. The University of Illinois at Champaign-Urbana was awarded program funding in the area of Security of Health IT and looks to advance the requirements, foundations, design, development, and deployment of security and privacy tools and methods. This project is organized around three major health care environments: EHRs, Health Information Exchange (HIE), and Telemedicine (TEL). A multidisciplinary team of computer security, medical, and social science experts are developing security and privacy policies and technology tools to support electronic use and exchange of health information. The objective of this SHARP project is to address strategic crosscutting themes that foster collaboration, consistency, and a multi-purpose technology convergence of EHR, HIE, and TEL. The first anticipated outcome of the Security of Health IT project is to improve the maturity of security and privacy technologies and policies to remove a key range of security and privacy barriers that prevent current health IT systems from moving to “higher” stages of meaningful use. The second anticipated outcome of the project is the creation of an integrated multidisciplinary research community in security and privacy for health IT that will facilitate progress beyond the scope and duration of this project. Patient-Centered Cognitive Support. The University of Texas Health Science Center at Houston was awarded the Patient-Centered Cognitive Support SHARP award to establish a National Center for Cognitive Informatics and Decision-Making in Healthcare (NCCD) with eight member institutions to respond to the urgent and long-term cognitive challenges in health IT adoption and meaningful use. NCCD’s vision is to become a national resource providing strategic leadership in research and applications for patient-centered cognitive support in health care. NCCD’s mission is three-fold: I. To bring together a collaborative, interdisciplinary team of researchers (from the fields of biomedical and health informatics, cognitive science, computer science, clinical sciences, industrial and systems engineering, and health services research) across the nation with the highest level of expertise in patient-centered cognitive support research; II. To conduct short-term research that addresses the urgent usability, workflow, and cognitive support issues concerning health IT, as well as long-term, breakthrough research that can fundamentally remove the key cognitive barriers to health IT adoption and meaningful use; and FINAL REPORT APPENDICES | 7 NORC | Assessing the SHARP Experience III. To translate research findings to the “real world” through a cooperative program involving researchers, patients, providers, health IT vendors, and other stakeholders to maximize the benefits of health IT for health care quality, efficiency, and safety. NCCD leads six research projects to fundamentally address the cognitive challenges in health IT identified by ONC, focusing on work-centered design, cognitive foundations for decision-making, adaptive decision support, model-based data summarization, visualization, and distributed teamwork. NCCD will deliver short-term tools within the first two years and longer-term breakthroughs in four years, and will translate them into real-world health care settings through an elaborate and coordinated effort to support and accelerate the adoption and meaningful use of health IT. Health Application and Network Platform Architectures. Harvard University created the Substitutable Medical Applications Reusable Technologies (SMArt) project to bring together researchers, industry partners, clinicians, and other stakeholders to lay the groundwork necessary to enable a tectonic shift to a flexible health IT environment that includes SMArt platform architecture. This incorporates a user interface that will allow “iPhone-like” substitutability for medical applications based upon shared basic components. Additionally, the platform will include a set of services that enable efficient data capture, storage, and effective data retrieval and analytics, which will be scalable to the national level but nonetheless respectful of institutional autonomy and patient privacy. Four specific projects address a number of these goals. Project 1 focuses on the networked services that are required for the SMArt platform and how they scale from the practice to the nation. Project 2 is an investigation of the SMArt platform architecture that includes testing a small number of apps such as medication-management transactions among multiple stakeholders. Project 3 investigates how to retrofit existing commercial and non-profit, open-source health IT platforms so that SMArt apps can be substituted on all of them, as needed. Project 4 lays down the sustainable infrastructure for a SMArt ecosystem whereby apps and platforms can be rapidly tested, shared, and substituted in a SMArt exchange. Secondary Use of EHR Data. The Mayo Clinic generated a framework of open-source services that can be dynamically configured to transform EHR data into standards-conforming, comparable information suitable for large-scale analyses, inferencing, and integration of disparate health data. The project expands upon evolving methods for using EHR data captured and maintained in disparate formats to create cogent, structured information for uses outside of the primary function of supporting clinical care using the FINAL REPORT APPENDICES | 8