AMIA 2014 Panels

The specific time and date of all sessions, speakers names and abstracts are available in the Itinerary Planner. It is an excellent tool for building your AMIA 2014 Symposium experience.

Didactic Panels

This panel format is on a specific aspect of theory, application, or experience pertaining to any aspect of biomedical or health informatics, or provides interdisciplinary viewpoints that cut across traditional themes.

S02: Squaring the Circle: Managing Local Healthcare Terminologies in the Age of Standardization

Sunday, November 16
3:30 p.m. – 5:00 p.m.

Titus Schleyer, Indiana University; Daniel Vreeman, Regenstrief Institute; Mark Tuttle, Apelon; James Cimino, NIH Clinical Center

Healthcare has benefited from the increasing maturity, availability and implementation of standardized vocabularies. However, many healthcare organizations continue to maintain local terminogies. In doing so, healthcare institutions, individually as well as collectively, expend significant resources on local terminology creation, maintenance and mapping to standardized vocabularies. The purpose of this panel is to describe current approaches to managing both standardized and local terminologies, elucidate challenges and opportunities, and discuss future-oriented strategies for making the process more efficient and effective. The Regenstrief Dictionary, Logical Observation Identifiers Names and Codes (LOINC), Medical Entities Dictionary (MED) at Columbia University Medical Center and the Research Entities Dictionary (RED) at the NIH will serve as case studies. The panel will discuss how a variety of tools, such as the Distributed Terminology System from Apelon, can support local terminology efforts.

S16: Informatics without Borders: International Outreach of US-based Training Programs

Monday, November 17
10:30 a.m. – 12:00 p.m.

Lucila Ohno-Machado, University of California San Diego; William Hersh, OHSU; Cynthia Gadd, Vanderbilt University; Rebecca Crowley, University of Pittsburgh

Biomedical research and health services research have been increasingly relying on international collaboration. Team science has expanded beyond regional and national collaborations into an ecosystem of collaborators that are united by common goals through an electronic infrastructure for research. It has thus become important that all collaborators have adequate human and material resources to participate in international research networks.  We will discuss how some biomedical informatics training programs based in the USA have been partnering with institutions from around the world to build capacity in informatics and have been empowering researchers with infrastructure and tools to participate in globalized biomedical research. We will cover (a) cultural and economic barriers for implementation of certain programs, (b) programs we developed to respond to the short- and medium-term needs of our international collaborators, (c) how we adapted existing research-enabling tools to facilitate research in developed and developing countries, and (d) how we adapted distance-learning and related technologies to facilitate this work. We will also discuss the importance of embedding international students in our training programs in the US, and the advantages that this type of diversity brings in terms of promoting broader cultural understanding that benefits all our faculty, students, and staff.

S27: Handling Clinical and Next Generation Sequencing Data: New Strategies in i2b2 and tranSMART

Monday, November 17
1:45:00 p.m. – 3:15:00 p.m.

Shawn Murphy, Partners Healthcare; Riccardo Bellazzi, Matteo Gabetta, University of Pavia; Paul Avillach, Harvard Medical School; Lori Phillips, Partners Healthcare

Within the next one to two years, we can expect to have over 100,000 genomes sequenced. Many of these genomes will belong to patients for whom we have extensive medical records. This will present an opportunity to find rapid associations of genotype to phenotype and exercise precision medicine. It is sobering therefore to learn that although we are poised to take advantage of the explosions of genomic data as well as the data from our healthcare enterprise, that there are few approaches to data representation that allow us to query the two types of data in unison.; Although genome browsers at UCSC, Ensembl, and the National Center for Biotechnology Information (NCBI), as well as the model organism databases (e.g., Wormbase, Flybase, Saccharomyces Genome Database (SGD), and Mouse Genome Database (MGD]), have become essential tools for the analysis of genomic, molecular biology data, the representation of phenotypic data is unable to accommodate the complex representations of human phenotypes as exists in our healthcare system [11]. In the same way, typical representations of healthcare data in both transaction-based electronic medical records (VISTA, OpenEMR), as well as analytic healthcare models (mini-sentinel, virtual data model, and observational medical outcomes partnership) do not accommodate genomic data with any facility [12]. In this panel we will discuss and present three approaches that have been taken within the i2b2 community to approach the implementation of a genomic-phenomic query capability. These three groups agreed to contrast their approaches using a standard dataset to illustrate their specific approaches and tradeoffs.

S37: Evolving Career Landscapes in Biomedical and Health Informatics

Monday, November 17
3:30 p.m. – 5:00 p.m.

Rui Zhang, University of Minnesota; William Hersh, Oregon Health & Science University; Genevieve Melton, University of Minnesota; Yang Huang, Kaiser Permanente HealthConnect Southern California; Laura Wiley, Vanderbilt University; Julie Doberne, Oregon Health & Science University; Nawanan Theera-Ampornpunt, Medicine Ramathibodi Hospital, Mahidol University

The career landscape for biomedical and health informatics students continues to expand. With the recent successful administration of the first Clinical Informatics Subspecialty Board Exam and trends in the fields such as healthcare data analytics, the informatics workforce must be well-prepared for diverse career opportunities and a changing healthcare landscape. This panel will offer perspectives and advice for students on the success of their career opportunities and professional development. This year, panelists include an academic program director, hospital chief medical informatics officer (CMIO), and industry Research and Development director, each with different training backgrounds (e.g., MD, PhD, MA). They will share their experiences and discuss upcoming trends in informatics careers with students. This panel will help current informatics students and early-career professionals to better prepare for and develop their careers.

S52: Genomic Dark Matter, Druggability and Misunderstood Targets

Tuesday, November 18
10:30 a.m. – 12:00 p.m.

Subramani Mani, University of New Mexico; Joshua Swamidass, Washington University in St. Louis; Noel Southall, NIH; Tudor Oprea, University of New Mexico

Researchers and pharmaceutical companies have typically focused on a small part of the coding region (exome) for drug targeting thus shedding light on these regions from a druggability perspective while leaving large tracts of the exome dark. This panel will introduce the concepts of genomic dark matter, druggability of genes/proteins and misunderstood targets. We will also introduce an in-silico framework for illuminating the druggable genome by discussing the approaches taken for the creation of the Illuminating the druggable genome knowledge management center (IDG KMC) and the Target Central Resource Database (TCRD). TCRD will serve as a go to resource for developing a mechanistic understanding of newly discovered set of biomarkers for a clinical condition from a druggability perspective and this will be illustrated in the panel presentation using the set of ranked biomarkers identified for early detection of neonatal sepsis. In short the proposed panel will discuss effective strategies for shedding light on the dark matter of the druggable genome to identify useful and effective drug targets.

S53: The Clinical Quality Framework Initiative: Harmonizing Clinical Decision Support and Clinical Quality Measurement Standards to Enable Interoperable Quality Improvement

Tuesday, November 18
10:30 a.m. – 12:00 p.m.

Kensaku Kawamoto, University of Utah; Marc Hadley, The MITRE Corporation; Kate Goodrich, Centers for Medicare and Medicaid Services (CMS); Jacob Reider, Office of the National Coordinator for Health Information Technology

Clinical decision support (CDS) and electronic clinical quality measurement (eCQM) are closely related and share many common requirements. However, CDS and eCQM standards were developed in parallel and utilize different approaches for representing patient information and computable expression logic.This divergence imposes additional burdens on users of the standards and limits the ability to cross-leverage eCQM resources for CDS, and vice versa.  To address this important problem, the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare & Medicaid Services (CMS) are sponsoring an open, public-private collaborative effort to establish a single, harmonized set of standards for CDS and eCQM. This effort, known as the Clinical Quality Framework (CQF) initiative, is developing and validating common standards for representing patient data, expression logic, and metadata for the purposes of quality improvement. Moreover, CQF is re-factoring existing CDS and eCQM standards to utilize these common components. In this panel, CQF leaders, including the CMO of ONC and the Director of Quality Measurement at CMS, will provide an overview of CQF, its methodology, and its deliverables. Standards developed and validated through CQF will be available to policy makers for potential inclusion in future EHR certification requirements.

S64: Safety-enhanced Design as a Meaningful Use Objective: Evaluating and Advancing the Usability of Electronic Health Records

Tuesday, November 18
1:45 p.m. – 3:15 p.m.

Jan Horsky, Brigham & Women's Hospital; Blaine Takesue, Regenstrief Institute; Rebecca Farr, Intermountain Healthcare; Vimla Patel, The New York Academy of Medicine

Effective, safe and routine use of HIT by clinicians is predicated on the availability of well-designed systems that have excellent usability characteristics and are integrated into clinical workflows. The ONC has required for the first time that institutions and vendors developing EHRs submit results of summative usability evaluations as part of their Meaningful Use Stage 2 certification application. The intent was to let developers provide evidence of usability of their product and to allow consumers to compare across systems. The format and minimal content of the usability report was therefore specified in an NIST-developed template but the methods of evaluation and its extent varied widely. This panel will present compare and discuss the evaluation process and lessons learned at three institutions with advanced home-grown EHRs - The Medical Gopher, HELP and the Longitudinal Medical Records systems.

S73: There is Nothing as Practical as a Good Theory: Building the PCORNet Clinical Data Research Network

Tuesday, November 18
3:30 p.m. – 5:00 p.m.

Charles Borromeo, University of Pittsburgh School of Medicine; Bari Dzomba, Penn State Hershey College of Medicine; Mark Weiner, Temple University School of Medicine; Harold Lehmann, Johns Hopkins University School of Medicine

The goal of the Patient-Centered Outcomes Research Institute’s (PCORI) National Patient-Centered Clinical Data Research Network (CDRN) Program is to improve the nation’s capacity to conduct comparative effectiveness research efficiently, by creating a large, highly representative electronic data infrastructure for conducting clinical outcomes research. The creation of a sustainable network requires investment in information technology, adherence to data standards, development of sensible regulatory processes, and alignment with the clinical operations of the participating health systems. This Panel represents the members of the PaTH CDRN.  Each member will describe their institutions’ baseline readiness and their development since the award. We will also describe key issues and insights we have experienced in creating our CDRN including choosing and using common data models, practical issues in applying data standards, and implementing inter-institutional query tools like i2b2, and addressing the regulatory and research informatics issues inherent to a multi-institutional research network

S84: Clinical Natural Language Processing in Languages Other Than English

Wednesday, November 19
8:30 a.m. – 10:00 a.m.

Aurelie Neveol, CNRS; Hercules Dalianis, Stokholm University; Guergana Savova, Harvard Medical School; Pierre Zweigenbaum, CNRS

Natural Language Processing (NLP) of clinical free-text has received a lot of attention from the scientific community. Clinical documents are routinely created across health care providing institutions and are generally written in the official language(s) of the country these institutions are located in. As a result, free-text clinical information is written in a large variety of languages. While most of the efforts for clinical NLP have focused on English, there is a strong need to extend this work to other languages, for instance in order to gain medical information about patient cohorts in geographical areas where English is not an official language. Furthermore, adapting current NLP methods developed for English to other languages may provide useful insight on the generalizability of algorithms and lead to increased robustness. This panel aims to provide an overview of clinical NLP for languages other than English, as for example French, Swedish and Bulgarian and discuss future methodological advances of clinical NLP in a context that encompasses English as well as other languages.

S85: Allergies and Intolerances – Standards for Interoperability

Wednesday, November 19
8:30 a.m. – 10:00 a.m.

Elaine Ayres, NIH Clinical Center; Russell Leftwich, Tennessee Office of eHealth; Lisa Nelson, Life Over Time Solutions

The management and exchange of drug, food and environmental allergies and intolerances is essential for patient safety. Over the past several years, the international standards community has developed new models for the documentation and interoperability of allergies and intolerances. This panel will address new HL7 standards for adverse reactions, allergies and intolerances including V3 clinical models, FHIR resources and Consolidated CDA templates. Case studies will provide attendees with examples of how to represent key allergy and intolerance concepts including undifferentiated adverse reactions, reaction severity and condition criticality. The use of these concepts for quality measure reporting will also be discussed.

S96: The PHR Ignite Project: Advancing Consumer-mediated Exchange

Wednesday, November 19
10:30 a.m. – 12:00 p.m.

Stephanie Rizk, RTI International; Deepthi Rajeev, HealthInsight; Shellery Cunningham, RTI International

The growth of electronic health information technology provides new opportunities to actively engage patients in their healthcare. Over the last few years, applications such as personal health records (PHRs) have been widely recognized as instruments to promote patient-centered care and influence patient engagement. Despite advances in health information technology, studies have found that PHRs are not widely adopted across the United States of America. Under funding from the Office of the National Coordinator for Health Information Technology (ONC), RTI International convened partners to support the PHR Ignite project which aimed to study the use of PHRs and their potential to support consumer-mediated exchange. The objectives were to: (a) understand attitudes of consumers towards PHRs, (b) identify features and functionalities of PHRs that may influence adoption among consumers, (c) understand the barriers that discourage the use of PHRs, and (d) explore the use of PHRs to demonstrate the bi-directional exchange between patients and healthcare providers. This panel will present findings and lessons learned during this project and discuss opportunities to improve patient engagement and consumer-mediated exchange.

S97: What's In A Name: Precision Medicine and a New Nosology

Wednesday, November 19
10:30 a.m. – 12:00 p.m.

Mark Tuttle, Apelon; Stuart Nelson; Yves Lussier, University of Arizona; Funda Meric-Bernstam, MD Anderson

In 2012 the National Research Council published a white paper on the need for a new taxonomy of disease, noting the failure of our current disease names to address the needs of precision medicine, based on a deeper understanding of nosology and the requirements of personalized medicine. The panel will discuss the implications of this call in several ways. Dr. Lussier will discuss promising translational bioinformatics innovations in precision therapeutics. Dr. Meric-Bernstam will discuss the importance of finding actionable abnormalities in the genome of the tumors she treats with precision. Dr. Nelson will discuss how this new knowledge can be incorporated into the Bloisian model of disease descriptions as well as how the “classical” patient findings can be used to further develop these descriptions. Mr. Tuttle will discuss the growing experience with supervised and unsupervised machine learning as a tool of discovery, and the application of this paradigm to nosology.


Interactive Panels

This panel format creates an interactive event between the organizers and an active audience. Panels introduce topics that are either controversial or deemed to elicit varying opinions and questions, as well as active discussions.

S01: Patient-Generated Health Data in Practice: Learning from the Early Experiences of Innovators

Sunday, November 16
3:30 p.m. – 5:00 p.m.

Jonathan Wald, RTI; Samue Rosenbloom, Vanderbilt University Medical Center; Susan Woods, Veterans Health Administration; Carolyn Kerrigan, Dartmouth Hitchcock Medical Center; Alistair Erskine, Geisinger Health System; Neil Wagle, Partners HealthCare; John Mattison, Kaiser Permanente

Patient-generated health data (PGHD) is important for monitoring chronic conditions, treatment adherence, treatment response, symptom severity, satisfaction, and shared decision-making. PGHD arises in a variety of contexts – it may be patient- or caregiver-initiated, passive data from a device, responses to a provider or care team request, or corrections when medical chart information is accessible to the patient. Through these and other uses, PGHD can play a significant role in care quality, patient safety, practice efficiency, and the patient care experience. Innovative organizations are gaining experience in collecting, reviewing, and documenting PGHD. A technical expert panel convened in 2013 on behalf of the Office of the National Coordinator for Health IT examined key PGHD opportunities and issues, supporting PGHD as a federal Stage 3 meaningful use objective. While information submitted by patients can benefit patient care, shared decision making, quality reporting, comparative effectiveness research, quality improvement efforts, and marketing activities, digital PGHD also elicits clinician concern about liability, information veracity, impacts on provider workflow, mismatched provider-patient expectations, and limited resources for timely analysis of PGHD. This interactive panel brings together leading innovators for a discussion of digital PGHD use in a variety of settings and contexts. Topics will include: good practices in selecting apps and data for gathering and managing PGHD; types and value of PGHD; how PGHD is received, reviewed, and documented; provider and patient intentions in using PGHD; policies supporting the use of PGHD; and practical approaches to making PGHD actionable.

S15: Innovative Approaches to Medication Reconciliation within the Veterans Health Administration: Designing the Magic Pill

Monday, November 17
10:30 a.m. – 12:00 p.m.

Blake Lesselroth, Kathleen Adams, Portland Veterans Affairs Medical Center; Steven Simon, Veterans Affairs Boston Healthcare System; Kenneth Boockvar, James J Peters Veterans Affairs Medical Center; Peter Kaboli, Iowa City Veterans Affairs Medical Center

Medication discrepancies at interfaces-in-care are an important source of preventable iatrogenic injury, causing an estimated 1 million hospitalizations and 7,000 deaths in the US annually at an estimated cost of $500 million annually.  While medication reconciliation (MR) has been described as an effective process to surface medication discrepancies and avoid adverse drug events, most institutions have struggled to implement durable MR interventions. The Veterans Health Administration (VHA) features a robust electronic health record and manages the entire medication distribution supply chain from provider order entry to home medication delivery. Consequently, VHA is well positioned to develop and study innovative strategies to manage MR. This panel, which includes clinician-informaticians and health services researchers from across the VHA enterprise, will describe an array of quality improvement initiatives designed to address MR throughout the care continuum. Panelists will discuss: 1) multimedia applications intended to improve clinician accuracy, 2) patient portals to improve patient engagement and self-efficacy, 3) the use of regional health-information exchanges to close information gaps, and 4) implementation studies designed to identify best practices.; Panelists will also engage the audience in a dialog exploring the emerging data management and sociotechnical challenges that continue to besiege quality improvement initiatives.

S26: Enhancing Patient Engagement in the Inpatient Care Setting

Monday, November 17
1:45:00 p.m. – 3:15:00 p.m.

David Vawdrey, Columbia University; Patricia Dykes, Brigham and Women’s Hospital; Ryan Greysen, University of California San Francisco; Ann OBrien, Kaiser Permanente; Jaap Suermondt, HP Labs

Patient engagement has been compared to a “blockbuster drug” that has potential to improve the quality and reduce the costs of healthcare. This panel will explore how health information technology - specifically tablet computers - can facilitate patient engagement in the inpatient care setting. The panelists will summarize their individual experiences leading projects at their respective institutions where tablet computers have been employed to deliver tailored information to patients and to enhance patient-provider communication. These projects represent a variety of hardware/software platforms, EHR systems, patient populations, and organizational models. The panelists will discuss the current and future state of inpatient engagement technology, debating topics such as: 1) what information should be shared with patients, and in what form should it be displayed; 2) how to best engage patients’ family members and care partners while protecting patients’ privacy interests, 3) how can technology support patients with low health literacy and health numeracy, and 4) how have institutions’ patient engagement efforts affected frontline physicians, nurses, and other healthcare providers. Ample time will be provided for audience questions and group discussion.

S38: How Safe are Users of Consumer Health Informatics?

Monday, November 17
3:30 p.m. – 5:00 p.m.

Thomas Wetter, Heidelberg University; Mary Czerwinski, Microsoft Research; George Demiris, University of Washington; Robert Hsiung, Dr. Bob LLC; Holly Jimison, Northeastern University

Consumer Health Informatics (ConsHI) has proven beneficial for many medical and mental conditions. Since it assigns the patient an active role reliable patient contributions are a necessary condition for safe operation, but cannot be taken for granted when patient physical, mental or emotional states deteriorate. The panel presents different approaches from within and outside ConsHI (Home monitoring of cognitive and physical functions, emotion tracking, behavior in online communities), that allow early detection and curbing of the risks. Routine application of such safeguards creates large amounts of data that must be protected against privacy breaches and that must be made sense of, and it causes additional cost. Patients and policy makers therefore face choices whether to mandate such additional safety when ConsHI service go routine.

S51: Nursing Data to Support the C-CDA, eMeasures, and Big Data Science - Ready or Not?

Tuesday, November 18
10:30 a.m. – 12:00 p.m.

Connie Delaney, University of Minnesota; Gay Dolin, Intelligent Medical Ojects; Susan Matney, 3M Healthcare; Judith Warren, Warren Associates LLC; Bonnie Westra, University of Minnesota

Standardization of data and data structures are essential for sharable and comparable data to support the Consolidated Clinical Document Architecture (C-CDA), development of eMeasures (quality measure from electronic health records (EHRs)) for meaningful use of EHRs, and reuse of the data for big data science. Data standards and eMeasures are prescribed by the Federal government, LOINC for Assessments, and SNOMED-CT for nursing problems and interventions. Nursing has a long history of terminology development and mapping of nursing terminologies.This panel addresses the urgency of assuring that nursing data is ready to support these efforts and to learn strategies form the audience to rapidly propel standardization of data and data structures to support national efforts.

S62: HIE Enablers: A Crucial Need for Care Coordination Communication Among Long-term and Post-acute Care Front Line Nursing and Other Staff

Tuesday, November 18
1:45 p.m. – 3:15 p.m.

Jennie Harvell, U.S. Department of Health and Human Services; Gregory Alexander, University of Missouri; Colene Byrne, Westat; Michelle Dougherty, AHIMA Foundation

We propose a panel to explore and discuss the current conditions and enablers to support care coordination including transitions in Long-Term and Post-Acute Care (LTPAC). Our four expert panelists will provide position statements, based on their experience in current research and initiatives, about the state of HIT adoption and use of Health information exchange (HIE) to support LTPAC coordination. We will discuss policy levers that enable HIE, as well as barriers, such as the lagging HIT adoption by LTPAC providers and the status of HIE interoperability standards to support LTPAC. Our positions are grounded in important themes of Technology, Adoption, Communication, and Workflow, specific to LTPAC settings. A learning objective for persons participating in this panel discussion is to present a real-world view of LTPAC HIT and HIE adoption, and interactively explore opportunities to advance HIE with LTPAC providers, as senders and receivers of key patient information.

S63: Imaginary and Real Costs of Implementing HIT

Tuesday, November 18
1:45 p.m. – 3:15 p.m.

Jos Aarts, Erasmus University Rotterdam; Mark Dente, University of Utah; Andrea Gelzer, AmeriHealth Caritas; Ross Koppel, University of Pennsylvania; Catherine Craven, University of Missouri

The costs of implementing HIT have always been shrouded. Cost estimates were always a kind of a back of the envelope calculations, with apparent clear figures for contracting such as license and consulting fees and hardware purchase and very unclear figures for the costs of involving the organization, such as releasing health care professionals from their day-to-day duties, production loss, etc. This panel aims to discern myth and reality, to summarize what little is known, to present hands-on experience to deal with costs and propose a multidisciplinary research agenda, involving health informaticists, health care professionals, social scientists and economists.

S74: Patient Health Records (PHRs), Patient Access to their Records/Medical Information: Issues and Challenges

Tuesday, November 18
3:30 p.m. – 5:00 p.m.

Catherine Craven, University of Missouri; Joseph Kannry, Mount Sinai Health System; Jessica Ancker, Weill Cornell Medical College; Paul DeMuro, Schwabe, Williamson & Wyatt; Carolyn Petersen, Mayo Clinic

This panel will address issues and challenges regarding PHRs and patient access to their records and medical information. Four panelists will address the topic from their varied experiences and expertise as informaticists, clinicians, clinical staff, and an healthcare attorney. Rather than include a single panelist to represent the patient point of view, we have invited five engaged patients from SPM to participate in the audience, comment, ask questions, and react to and interact with the panelists and other audience members.

S75: Towards Developing an Undergraduate Interprofessional Biomedical Informatics Course

Tuesday, November 18
3:30 p.m. – 5:00 p.m.

Saif Khairat, University of Minnesota; Martha Adams, Duke University; Glynda Doyle, British Columbia Institute of Technology; Elaine Ayres, National Institutes of Health; Tiffany Kelley, Nexus Consulting

Biomedical Informatics training has expanded to include almost all clinical specialties. Whether it is a Masters, PhD, or even the new Sub-specialty in Clinical Informatics, graduate students and/or returning professionals have various informatics training options. However, Informatics education at the undergraduate level is not as well established. Despite initiatives such as TIGER and the Health Information Technology Scholars Program there is still a need to provide interprofessional education. As Informatics continues to grow and healthcare becomes more complex and data driven, there is a growing need to introduce fundamental concepts to undergraduate students to enhance their knowledge base and stimulate interest in the career of biomedical informatics. The panelists are leading efforts to develop a Biomedical Informatics course that addresses fundamental concepts and core competency skills. This panel will explore the needs and challenges to build an undergraduate course that includes core competencies for various clinical specialties including medicine, nursing, and allied professions such as nutrition. The proposed course will serve as a foundation for health professionals, which is different from the advanced ONC funded Health IT Workforce Curriculum Components. Panelists specifically aim to further understand the expectations of the AMIA community with regards to developing an interprofessional informatics course.

S95: Data Governance Dilemmas for Research and Clinical Care

Wednesday, November 19
10:30 a.m. – 12:00 p.m.

Bonnie Kaplan, Yale University; Paul DeMuro, Oregon Health & Sciences University; Kenneth Goodman, University of Miami; Frank Pasquale, University of Maryland; Peter Winkelstein, University at Buffalo

Legal and ethical considerations distinguish patient care and research. Data collection, protection, privacy, and permissions are governed differently for routine care and research data. Yet, neither patients nor clinicians can so easily separate the two; the distinction is not as clear-cut as it appears. Today’s clinical data is tomorrow’s research data. New technologies, medical advances, and the move toward learning health care systems further blur the distinction. Panelists discuss how the clinical/research distinction holds up in practice, and whether it should be refined or eliminated. They address dilemmas informaticians, patients, clinicians, and policy makers face because of the distinction between research and clinical care as it plays out in electronic record keeping, data storage, and data sharing. The panel considers such timely and controversial issues as: exactly which aspects of care, and the documentation of that care, are research, and which are clinical, when many may be both? Should consent procedures differ according to whether treatment is considered research? Should patient care be contingent on permission to use care data for research? When is a record review quality improvement and when is it research? What are the benefits and costs of maintaining the status quo and of proposals for change?