James J. Cimino

Impending Challenges for the Use of Big Data

Advances in data storage and data analysis materialized also in health care data. In recent years, we have seen an emphasis on using the full potential (1, 2) of these data to answer questions such as: who were the patients that received radiation therapy as primary treatment? Who among such patients experienced radiation therapyerelated complications? Given everything you know about my case, what is the chance that if I choose radiation therapy, I will experience incontinence in the next year? Factors contributing to this trend include more rapid data querying technologies, cheaper data storage, addition of genomic data to traditional clinical data sets, “meaningful use incentives” for increasing the adoption of electronic health records, and recent emergence of precision medicine (3). In this perspective paper, we discuss several challenges ahead for big data, some that are being addressed now and others that will need to be addressed in the near future. The list of challenges presented here is not meant to be an exhaustive list but is rather driven by our big data experience. For each challenge, we provide comments on current approaches to address the challenge.

Terminology challenges implementing the HL7 context-aware knowledge retrieval (‘Infobutton’) standard

Point-of-care information needs are common and frequently unmet. One solution to this problem is the use of Infobuttons, which are context-sensitive links from electronic health records (EHR) to knowledge resources, sometimes involving an intermediate broker known as an Infobutton Manager. Health Level Seven (HL7) has developed the Context-Aware Knowledge Retrieval (Infobutton) standard to standardize the integration between EHR systems and knowledge resources. While the standard specifies a set of context attributes and standard terminologies, it leaves to knowledge resources the flexibility to decide how to use these attributes and terminologies to retrieve the most relevant content. This paper describes some of the challenges faced by knowledge resources in trying to locate the most relevant content based on the attribute values for a given Infobutton request. Various approaches to content retrieval are discussed, including the role of indexing with standardized codes, the role of text-based search engines together with their ranking algorithms, and the role of hybrid approaches. Knowledge resource developers must carefully consider business rules, heuristics, and precision/recall tradeoffs when implementing the HL7 Infobutton standard.

Context-sensitive decision support (infobuttons) in electronic health records: A systematic review

Objective: Infobuttons appear as small icons adjacent to electronic health record (EHR) data (e.g., medications, diagnoses, or test results) that, when clicked, access online knowledge resources tailored to the patient, care setting, or task. Infobuttons are required for “Meaningful Use” certification of US EHRs. We sought to evaluate infobuttons’ impact on clinical practice and identify features associated with improved outcomes. Methods: We conducted a systematic review, searching MEDLINE, EMBASE, and other databases from inception to July 6, 2015. We included and cataloged all original research in any language describing implementation of infobuttons or other context-sensitive links. Studies evaluating clinical implementations with outcomes of usage or impact were reviewed in greater detail. Reviewers worked in duplicate to select articles, evaluate quality, and abstract information. Results: Of 599 potential articles, 77 described infobutton implementation. The 17 studies meriting detailed review, including 3 randomized trials, yielded the following findings. Infobutton usage frequency ranged from 0.3 to 7.4 uses per month per potential user. Usage appeared to be influenced by EHR task. Five studies found that infobuttons are used less often than non–context-sensitive links (proportionate usage 0.20–0.34). In 3 studies, users answered their clinical question in > 69% of infobutton sessions. Seven studies evaluated alternative approaches to infobutton design and implementation. No studies isolated the impact of infobuttons on objectively measured patient outcomes. Conclusions: Weak evidence suggests that infobuttons can help providers answer clinical questions. Research on optimal infobutton design and implementation, and on the impact on patient outcomes and provider behaviors, is needed.

User-centered design of multi-gene sequencing panel reports for clinicians

The objective of this study was to develop a high-fidelity prototype for delivering multi-gene sequencing panel (GS) reports to clinicians that simulates the user experience of a final application. The delivery and use of GS reports can occur within complex and high-paced healthcare environments. We employ a user-centered software design approach in a focus group setting in order to facilitate gathering rich contextual information from a diverse group of stakeholders potentially impacted by the delivery of GS reports relevant to two precision medicine programs at the University of Maryland Medical Center. Responses from focus group sessions were transcribed, coded and analyzed by two team members. Notification mechanisms and information resources preferred by participants from our first phase of focus groups were incorporated into scenarios and the design of a software prototype for delivering GS reports. The goal of our second phase of focus group, to gain input on the prototype software design, was accomplished through conducting task walkthroughs with GS reporting scenarios. Preferences for notification, content and consultation from genetics specialists appeared to depend upon familiarity with scenarios for ordering and delivering GS reports. Despite familiarity with some aspects of the scenarios we proposed, many of our participants agreed that they would likely seek consultation from a genetics specialist after viewing the test reports. In addition, participants offered design and content recommendations. Findings illustrated a need to support customized notification approaches, user-specific information, and access to genetics specialists with GS reports. These design principles can be incorporated into software applications that deliver GS reports. Our user-centered approach to conduct this assessment and the specific input we received from clinicians may also be relevant to others working on similar projects.

Facilitating biomedical researchers' interrogation of electronic health record data

Electronic health records (EHR) are a vital data resource for research uses, including cohort identification, phenotyping, pharmacovigilance, and public health surveillance. To realize the promise of EHR data for accelerating clinical research, it is imperative to enable efficient and autonomous EHR data interrogation by end users such as biomedical researchers. This paper surveys state-of-art approaches and key methodological considerations to this purpose. We adapted a previously published conceptual framework for interactive information retrieval, which defines three entities: user, channel, and source, by elaborating on channels for query formulation in the context of facilitating end users to interrogate EHR data. We show the current progress in biomedical informatics mainly lies in support for query execution and information modeling, primarily due to emphases on infrastructure development for data integration and data access via self-service query tools, but has neglected user support needed during iteratively query formulation processes, which can be costly and error-prone. In contrast, the information science literature has offered elaborate theories and methods for user modeling and query formulation support. The two bodies of literature are complementary, implying opportunities for cross-disciplinary idea exchange. On this basis, we outline the directions for future informatics research to improve our understanding of user needs and requirements for facilitating autonomous interrogation of EHR data by biomedical researchers. We suggest that cross-disciplinary translational research between biomedical informatics and information science can benefit our research in facilitating efficient data access in life sciences.

A survey of practices for the use of electronic health records to support research recruitment

Electronic health records (EHRs) provide great promise for identifying cohorts and enhancing research recruitment. Such approaches are sorely needed, but there are few descriptions in the literature of prevailing practices to guide their use. A multidisciplinary workgroup was formed to examine current practices in the use of EHRs in recruitment and to propose future directions. The group surveyed consortium members regarding current practices. Over 98% of the Clinical and Translational Science Award Consortium responded to the survey. Brokered and self-service data warehouse access are in early or full operation at 94% and 92% of institutions, respectively, whereas, EHR alerts to providers and to research teams are at 45% and 48%, respectively, and use of patient portals for research is at 20%. However, these percentages increase significantly to 88% and above if planning and exploratory work were considered cumulatively. For most approaches, implementation reflected perceived demand. Regulatory and workflow processes were similarly varied, and many respondents described substantive restrictions arising from logistical constraints and limitations on collaboration and data sharing. Survey results reflect wide variation in implementation and approach, and point to strong need for comparative research and development of best practices to protect patients and facilitate interinstitutional collaboration and multisite research.

Usability and Acceptance of the Librarian Infobutton Tailoring Environment: An Open Access Online Knowledge Capture, Management, and Configuration Tool for OpenInfobutton

Background The Librarian Infobutton Tailoring Environment (LITE) is a Web-based knowledge capture, management, and configuration tool with which users can build profiles used by OpenInfobutton, an open source infobutton manager, to provide electronic health record users with context-relevant links to online knowledge resources. Objective We conducted a multipart evaluation study to explore users’ attitudes and acceptance of LITE and to guide future development. Methods The evaluation consisted of an initial online survey to all LITE users, followed by an observational study of a subset of users in which evaluators’ sessions were recorded while they conducted assigned tasks. The observational study was followed by administration of a modified System Usability Scale (SUS) survey. Results Fourteen users responded to the survey and indicated good acceptance of LITE with feedback that was mostly positive. Six users participated in the observational study, demonstrating average task completion time of less than 6 minutes and an average SUS score of 72, which is considered good compared with other SUS scores. Conclusions LITE can be used to fulfill its designated tasks quickly and successfully. Evaluators proposed suggestions for improvements in LITE functionality and user interface.