Monday, March 25
S01: Panel – Developing Maturity Models for Research Informatics, Precision Health and Learning Health Systems: Updates & Discussion from Ongoing Initiatives
B. Knosp, University of Iowa; W. Barnett, Regenstrief Institute, Inc., Indiana University; N. Anderson, University of California Davis; A. Wilcox, University of Washington; J. Platt, University of Michigan; P. Embi, Regenstrief Institute, Inc., Indiana University
Ongoing developments and infrastructure investments in research informatics to enable precision health initiatives, learning health system activities, and the work of consortia like the CTSA, continue to drive adoption and use of research and health IT systems. These efforts and related institutional investments in IT and informatics to support across academic health centers is a challenging endeavor, and the level and manner of this planning varies from institution to institution, often with few methods to assess or measure whether institutional goals and objectives are aligned with IT and informatics investments. To help institutions develop strategies for their investments in IT and Informatics that are measurable and align with research agendas, groups have been working on maturity indices that can be used to facilitate internal discussions and establish standard metrics within and across institutions. Panelists will provide updates on the development and early experiences with related maturity models to drive key initiatives such as translational research, data analytics, precision health and learning health systems, as well as engage attendees on potential next steps in the development and application of these models and indices.
Tuesday, March 26
S06: Panel – The Evolving Role of the Chief Research Informatics Officer: Working at the Intersection of Research and Informatics
T. Winden, Kansas University Medical Center; J. Harper, Regenstrief Institute, Inc.; A. Lai, Washington University; C. Chute, Johns Hopkins University
The objectives of this panel is to engage participants in an in-depth discussion of the emerging issues and evolving role of the Chief Research Information Officer (CRIO). The title of CRIO was introduced just a few years ago, however the scope of work of a CRIO has existed under many different job titles. As different organizations have added this role there has developed variation in scope and breadth. While the role primarily exists at academic health systems, there are similar roles at health systems not affiliated with academia, albeit they may not hold the title CRIO. Panel members are CRIOs from four different organizations with varied backgrounds. The panel will discuss the uniqueness of the role at their respective organizations, scope of work, beneficial skillsets, opportunities and challenge, as well as insights into future evolution of the role in contributing to the learning health system and precision medicine.
S10: Panel – Development and Implementation of a Nursing Performance Improvement System (NPIS) in a Swiss University Hospital Center: A Collaborative Project between Nurse and IT Healthcare Data Analyst
J. Rapin, Montreal University, Centre Hospitalier Universitaire Vaudois (CHUV); S. Gendron, Montreal University; I. Lehn, Centre Hospitalier Universitaire Vaudois (CHUV); D. D'Amour, Montreal University; C. Mabire, Lausanne University; C. Dubois, Montreal University; F. Papon, N. Pinaud, F. Hadorn, V. Adatte, Centre Hospitalier Universitaire Vaudois (CHUV); G. Santos, Haute école de santé Fribourg; S. Gallant, D. Bouchard, Centre Hospitalier Universitaire Vaudois (CHUV)
This panel includes four presentations to describe the development and implementation phases of a nursing performance improvement system (NPIS) in a Swiss teaching hospital (CHUV). The first presentation will provide details of the development phase and illustrate system configurations that are designed to engage interprofessional care teams. The second will address evolving collaboration and co-learning processes between nurses and IT health care data analysts. The third presentation will discuss the challenges inherent to the development of reliable and appropriate indicators for nursing care improvement. Finally, we will discuss the implementation phase of the NPIS, with a specific focus on nurse manager training and supervision of interprofessional care teams.
S14: Panel – National Health Information Technology Priorities to Advance Research
Chaney, Office of the National Coordinator for Health Information Technology; A. Kho, Northwestern University Feinberg School of Medicine, Institute for Public Health and Medicine; J. Mandel, Microsoft Corporation, Harvard Medical School
The pace of research and evidence generation is anticipated to accelerate dramatically due to significant increases in the routine use of health information technology (IT) and the introduction of novel sources of electronic data. It is critical for the health IT community to anticipate health IT infrastructure changes required to realize future advances. The Office of the National Coordinator for Health Information Technology (ONC) Chief Scientist Division (CSD), charged with developing and evaluating ONC’s overall scientific efforts and activities, is developing a policy and development agenda on the work needed to advance the nation’s health IT infrastructure over the next three to five years in support of innovative biomedical and health services research. This panel will discuss health IT infrastructure gaps and the actions needed to address them from the perspective of published literature and reports, researchers, the software development community, and ONC leadership. Each panelist will summarize their perspective briefly, allowing time for participant interaction. An important objective of the panel is to inform the informatics community and gather participant input that will inform and strengthen the scientific policy and development agenda.
Wednesday, March 27
S19: Panel – Promoting Interoperability of Electronic Health Record Data
P. Dykes, M. Kang, Brigham & Women’s Hospital, Harvard Medical School; E. Gesner, University of Massachusetts; E. Gill, Commonwealth Fund; S. Collins, Columbia University
The HITECH (Health Information Technology for Economic and Clinical Health) Act of 2009 successfully stimulated the adoption of electronic health records (EHR) in hospitals and outpatient provider settings. However, meaningful use of EHRs with respect to routine exchange of electronic health information, improved care coordination, and quality reporting, remain elusive goals. Merit-based Incentive Payment System’s Promoting Interoperability Programs aim to move beyond the three stages of Meaningful Use to focus on true interoperability and improving patient access to health information. Promoting Interoperability holds potential for achieving the quadruple aim of enhancing patient experience, improving population health, reducing costs and improving the work life of providers (e.g., end documentation burden). To accomplish this aim without increasing clinician burden, it is necessary to expand the current capabilities of EHRs for processing and reconciling both structured and free text data. The purpose of this panel is to explore current interoperability challenges and to discuss ongoing work to address these challenges and to fully realize interoperable EHR systems that provide effective clinical decision support and truly reduce the time and cost of clinician participation.
S23: Panel – Operationalizing Innovation for the Return of Genetic and Genomic Results
L. Rasmussen, Northwestern University; M. Murugan, Baylor College of Medicine; S. Aronson, Partners HealthCare; J. Nestor, Columbia University; N. Walton, Geisinger
Now in its third cycle, the NHGRI-funded electronic Medical Records and Genomics (eMERGE) Network has conducted the return of genetic and genomic results within a clinical setting for consented research participants. Comprised of sequencing centers, academic medical centers and healthcare systems, eMERGE has afforded opportunities to explore novel approaches in supporting the return of results to patients and providers. This panel will look at innovations across the flow of results: laboratory data management for sequenced samples, transmission of structured results, incorporating patient preferences, and both active and passive clinical decision support (guidelines and infobuttons). The panel will not only describe the different solutions implemented at these institutions, but also how each organization operationalized the use of genetic information within a clinical setting. Panelists will describe barriers, tradeoffs, and lessons learned in the course of their respective projects. The interactive discussion with attendees will further explore local considerations and strategies for genetic and genomic implementation projects, and future research needs across health and biomedical informatics and implementation science.
S27: Panel – Open, Expert-curated, Harmonized, and Standardized Precision Oncology Knowledge, Ontologies and APIs
S. Madhavan, Georgetown University; R. Freimuth, Mayo Clinic; M. Brush, Oregon Health & Science University; M. Griffith, Washington University
A growing number of academic and community clinics are conducting genomic testing to inform treatment decisions for cancer patients. To inform this process, several institutions are engaged in the challenge of curating knowledgebases to annotate cancer genome variants associated with evidence of pathogenicity or linked to relevant treatment options, e.g., Washington University:CIViC, Vanderbilt:MyCancerGenome, MSKCC:OncoKB, JAX:CKB, MDACC:PCT and others. While these resources serve the specific institutional needs, there is clear value in sharing knowledge of cancer-variant-treatment-outcome associations. On this panel, using Oncology as a use case, we share a broad initiative that cuts across large translational networks and standards development organizations (SDOs) to address several challenges: variability in interpreting clinical grade variants, representation of gene/variant level evidence for cancer therapy implications, sharing knowledge related to cancer genomics, and capturing patient outcomes. Addressing each of these challenges will enable us to develop a robust solution for care and research that can more fully utilize cancer gene/variant data generated from patients. Four interconnected talks describe this broad initiative and how they leverage each other to make cancer molecular diagnostic data more accessible. In particular, this panel will go beyond a description of related but individual projects and will instead emphasize how by working together a more robust framework can be developed.
S32: Panel – Mental Health Research in the Open Science Era: Special Issues in Sharing Sensitive Behavioral Health Data
J. Tenenbaum, Duke University; G. Farber, NIH; I. Galatzer-Levy, Mindstrong Health, NYU School of Medicine; A. Busch, McClean Hospital; W. Ingram, Johns Hopkins University
The biomedical research enterprise is shifting both technologically and culturally toward an open science model with increased data sharing and broader dissemination strategies. Mental health and substance use disorders add a new dimension of nuance and difficulty in both the technical and ethical landscape around data sharing. Beyond traditional clinical and biological data, sources of behavioral health data including cell phones and wearable devices add to the tsunami of big data in biomedicine. In addition, mental health and substance use disorders historically have been stigmatized to a greater degree than most other illness types, leading to special rules and policies around data access. This panel will discuss a range of issues related to this topic from diverse perspectives including patient, provider, researcher, and funder.
Thursday, March 28
S37: Panel – Beyond the HER: Using Participants to Enhance the EHR with Participant Provided Information
Beyond Genetics and EHRs: Using Self -directed Technology-based Health Surveys in the All of Us Precision Medicine Program R. Cronin, Vanderbilt University; K. Natarajan, Columbia University; T. Koonce, Vanderbilt University Medical Center; S. Tirhi, Vibrent Health; S. Fowler, National Institutes of Health
Precision medicine aims to understand, prevent, and treat disease through the use of an individual’s genes, environment, and lifestyle. Information from health surveys can augment physiological measurements, biospecimens, and electronic health records (EHRs) to give a full picture of a person. We will present experiences from informaticians, survey design methodologists, information scientists, and technology developers about collecting information using participant-provided information (PPI) surveys in the All of Us precision medicine research program. Topics covered will include: development of an efficient and iterative process to test, refine, and launch PPI; challenges and opportunities of self-directed technology-based surveys; experiences creating a portal for participants to collect PPI; development of a metadata research database through review of survey metadata for population gaps and validation work of original parent surveys; and methods for mapping PPI to the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM). We will also discuss informatics successes and challenges using health surveys for precision medicine.
S42: Panel – Patient Stratification for Enabling Data-driven Clinical Interventions
K. Wagholikar, Harvard Medical School; S. Aronson, Partners Healthcare; C. Macrae, Brigham and Women's Hospital; S. Murphy, Partners Healthcare
An essential prelude to precision medicine is the stratification of patients into subpopulations for increased diagnostic and treatment efficacy. Before precision medicine can be widely implemented, the healthcare system needs to develop the ability to systematically identify and optimize the care for patient subpopulations. Patient populations can be grouped by the underlying disease and can be further categorized by the spectrum of recommended therapies, as the optimal therapy differs by disease severity and co-morbidities. By efficiently match patients to the right care management programs, improved outcomes can be obtained at less costs and in shorter time. However, successful adoption of patient stratification approach into the healthcare system requires technological and cultural changes. This panel reports on the results with patient stratification projects and delves into the challenges and future plans.
S47: Panel – Integrating Electronic Health Records in the Healthcare System of Low- and Middle- Income Countries: Challenges and Strategies
M. Kumar, University of North Carolina, MEASURE Evaluation; T. Payne, University of Washington; P. Biondich, Regenstrief Institute, Inc., Indiana University School of Medicine; W. Lober, University of Washington; J. Mostafa, University of North Carolina
This panel aims to share research evidence and country experiences related to adoption and use of electronic health record (EHR) in low -resource settings not only in low- and middle- income countries (LMICs) but also developed countries such as the United States. The importance of EHR integration in the healthcare context is underlined in the Report of the American Medical Informatics Association HER-2020 Task Force on the status and future direction of EHR. Discussion will focus on finding lessons and experiences from low-resource and high-resource settings for developing strategies to integrate EHR in the healthcare system of LMICs. Panel presentation and discussion are for professionals and policymakers engaged in planning, designing, implementing, using, and evaluating EHR in the healthcare system of LMICs.
S48: Panel – Communicating Health Science in a Digital World – Disseminating Public Health Research and Policy in the Age of Twitter, YouTube, and Social Media
C. Russo, TRI; J. Taaffe, National Institutes of Health; M. Gual Soler, American Association for the Advancement of Science; C. Dillworth, CryptoSyndicate
The 2014 Ebola outbreak presented a case where news coverage resulted in a disproportionate response. Updates from news outlets and social media sites (e.g., Twitter, Facebook, YouTube, Reddit) quickly went viral, in some cases leading to misinformation and panic. Still, there is great potential for communication via digital media outlets. Whole segments of the population that may have been previously unreachable now have easier access to health information. The visual and emotional nature of social media, as well as the personal connections formed can strengthen the message and drive better health outcomes. Three panelists will discuss digital outlets and new media formats in the context of health communication to policy and the public. The moderator, bioinformatician Dr. Cristina Russo, will lead with examples where medical informatics products and services can benefit from digital media. Panelists Dr. Jessica Taaffe discusses her views on science and global health on popular podcasts and YouTube; Dr. Marga Gual Soler communicates science diplomacy with a combination of Twitter, Science Slam, and Improv Theater; and Dr. Crystal Dilworth presents storytelling for overlapping audiences from cable television to YouTube channels.