The eMERGE Network: A consortium of biorepositories linked to electronic medical records data for conducting genomic studies

<p>Abstract</p> <p>Introduction</p> <p>The eMERGE (electronic MEdical Records and GEnomics) Network is an NHGRI-supported consortium of five institutions to explore the utility of DNA repositories coupled to Electronic Medical Record (EMR) systems for advancing discovery in genome science. eMERGE also includes a special emphasis on the ethical, legal and social issues related to these endeavors.</p> <p>Organization</p> <p>The five sites are supported by an Administrative Coordinating Center. Setting of network goals is initiated by working groups: (1) Genomics, (2) Informatics, and (3) Consent & Community Consultation, which also includes active participation by investigators outside the eMERGE funded sites, and (4) Return of Results Oversight Committee. The Steering Committee, comprised of site PIs and representatives and NHGRI staff, meet three times per year, once per year with the External Scientific Panel.</p> <p>Current progress</p> <p>The primary site-specific phenotypes for which samples have undergone genome-wide association study (GWAS) genotyping are cataract and HDL, dementia, electrocardiographic QRS duration, peripheral arterial disease, and type 2 diabetes. A GWAS is also being undertaken for resistant hypertension in ≈2,000 additional samples identified across the network sites, to be added to data available for samples already genotyped. Funded by ARRA supplements, secondary phenotypes have been added at all sites to leverage the genotyping data, and hypothyroidism is being analyzed as a cross-network phenotype. Results are being posted in dbGaP. Other key eMERGE activities include evaluation of the issues associated with cross-site deployment of common algorithms to identify cases and controls in EMRs, data privacy of genomic and clinically-derived data, developing approaches for large-scale meta-analysis of GWAS data across five sites, and a community consultation and consent initiative at each site.</p> <p>Future activities</p> <p>Plans are underway to expand the network in diversity of populations and incorporation of GWAS findings into clinical care.</p> <p>Summary</p> <p>By combining advanced clinical informatics, genome science, and community consultation, eMERGE represents a first step in the development of data-driven approaches to incorporate genomic information into routine healthcare delivery.</p

Health Information Technology in the United States: The Information Base for Progress

Health information technology (HIT) has the potential to advance health care quality by helping patients with acute and chronic conditions receive recommended care, diminishing disparities in treatment and reducing medical errors. Nevertheless, HIT dissemination has not occurred rapidly, due in part to the high costs of electronic health record (EHR) systems for providers of care—including the upfront capital investment, ongoing maintenance and short-term productivity loss. Also, many observers are concerned that, if HIT follows patterns observed with other new medical technologies, HIT and EHRs may diffuse in ways that systematically disadvantage vulnerable patient populations, thus increasing or maintaining existing disparities in access to and quality of care. These and other concerns have led to public and private efforts that aim to increase the pace of and reduce disparities in HIT diffusion by formulating national plans for dissemination, catalyzing the development of standards to encourage interoperability and promoting public-private partnerships to develop HIT infrastructures at the local and regional levels

Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions

BACKGROUND: As biobanks play an increasing role in the genomic research that will lead to precision medicine, input from diverse and large populations of patients in a variety of health care settings will be important in order to successfully carry out such studies. One important topic is participants’ views towards consent and data sharing, especially since the 2011 Advanced Notice of Proposed Rulemaking (ANPRM), and subsequently the 2015 Notice of Proposed Rulemaking (NPRM) were issued by the Department of Health and Human Services (HHS) and Office of Science and Technology Policy (OSTP). These notices required that participants consent to research uses of their de-identified tissue samples and most clinical data, and allowing such consent be obtained in a one-time, open-ended or “broad” fashion. Conducting a survey across multiple sites provides clear advantages to either a single site survey or using a large online database, and is a potentially powerful way of understanding the views of diverse populations on this topic. METHODS: A workgroup of the Electronic Medical Records and Genomics (eMERGE) Network, a national consortium of 9 sites (13 separate institutions, 11 clinical centers) supported by the National Human Genome Research Institute (NHGRI) that combines DNA biorepositories with electronic medical record (EMR) systems for large-scale genetic research, conducted a survey to understand patients’ views on consent, sample and data sharing for future research, biobank governance, data protection, and return of research results. RESULTS: Working across 9 sites to design and conduct a national survey presented challenges in organization, meeting human subjects guidelines at each institution, and survey development and implementation. The challenges were met through a committee structure to address each aspect of the project with representatives from all sites. Each committee’s output was integrated into the overall survey plan. A number of site-specific issues were successfully managed allowing the survey to be developed and implemented uniformly across 11 clinical centers. CONCLUSIONS: Conducting a survey across a number of institutions with different cultures and practices is a methodological and logistical challenge. With a clear infrastructure, collaborative attitudes, excellent lines of communication, and the right expertise, this can be accomplished successfully

Int J Healthc Inf Syst Inform

With data quality issues with administrative claims and medically derived datasets, a dataset derived from a combination of sources may be more effective for research. The purposes of this article is to link an EMR-based data warehouse with state administrative data to study individuals with rare diseases; to describe and compare their characteristics; and to explore research with the data. These methods included subjects with diagnosis codes for one of three rare diseases from the years 2009-2014; Spina Bifida, Muscular Dystrophy, and Fragile X Syndrome. The results from the combined data provides additional information that each dataset, by itself, would not contain. The simultaneous examination of data such as race/ethnicity, physician and other outpatient visit data, charges and payments, and overall utilization was possible in the combined dataset. It is also discussed that combining such datasets can be a useful tool for the study of populations with rare diseases.CC999999/ImCDC/Intramural CDC HHS/United States2020-09-09T00:00:00Z32913425PMC7479970836

Reducing Patient Handoff Inadequacies Using an Electronic Medical Record Based Standardized Handoff Tool in the Critical Care Unit

INTRODUCTION: Inadequate handoff communication is a contributing factor in sentinel events and adverse patient outcomes. Research has shown that the use of a standardized handoff tool can improve quality of handoff communication. This quality improvement (QI) project sought to standardize handoff and reduce the risk of adverse patient outcomes by utilizing the I-PASS handoff tool available in the electronic medical record (EMR). AIM: The aim of this quality improvement project was to improve the accuracy of nurse-to-nurse patient handoffs. METHODS: The outcomes measured by the post-intervention survey were the number of reported handoffs received with omissions, the percentage of staff using the standardized report tool regularly, and staff satisfaction with the standardized handoff tool. The primary measures were the percentage of handoffs with omissions as reported on the post-intervention surveys. A quantitative analysis of post-intervention survey responses was performed using descriptive statistical analyses. The frequency of reported handoffs with omissions and the associated method of handoff were obtained from the post-intervention survey responses using a tick and tally method. RESULTS: The I-PASS handoff tool post-educational feedback survey results were as follows (1) 100% of the nursing staff either strongly agreed or agreed that they were confident in their ability to give an organized and concise handoff report; (2) 84% of respondents agreed or strongly agreed that the I-PASS tool could be beneficial in increasing patient safety on the unit (3) 83% of nursing staff either agreed or strongly agreed that utilizing the handoff tool could be beneficial in keeping report on topic; (4) 100% of respondents either agreed or strongly agreed that they liked the idea of using an I-PASS tool that is linked to the patients EMR; and (5) 100% of respondents agreed that I-PASS could be a beneficial tool for relaying patient handoffs and that SBAR would be a good way to communicate patient status changes. DISCUSSION: The purpose of this QI project was to minimize the risk of adverse patient outcomes caused by inadequate communication. Due to conflicting priorities, the outcomes of this QI project deviated from the previously outlined aims. The updated aim of the final project was to provide staff education related to the I-PASS tool while obtaining feedback from the nursing staff on their perceptions of usefulness of integration into practice. The key finding of this project was that the staff nurses agree that I-PASS could be useful in several ways if integrated into practice

Assessing the potential of national strategies for electronic health records for population health monitoring and research

"Initiated in October 2004, this project builds upon two previous reports that portray a new landscape for health statistics: Shaping a Health Statistics Vision for the 21st Century: The Final Report, a joint report developed by the National Committee on Vital and Health Statistics, the Centers for Disease Control and Prevention's National Center for Health Statistics, and the U.S. Department of Health and Human Services' Data Council (Friedman, Hunter, Parrish 2002); and Information for Health: A Strategy for Building the National Health Information Infrastructure, a report released by the National Committee on Vital and Health Statistics (2001)." - p. 1"The purpose of this report is to assess the potential of national strategies for electronic health records for population health monitoring and research. The emphasis in this report is upon those types of population health monitoring typically used to develop health statistics, such as population-based registries, population-based surveys, and administrative health data, rather than those types of population health monitoring used to detect health events and diseases for the purposes of immediate public health interventions. More specifically, this report has a fourfold purpose: first, to describe the current status of national strategies for electronic health records and their supporting national health information infrastructures in Australia, Canada, England, and New Zealand, especially as those national strategies relate to population health monitoring to produce health statistics and research employing health statistics; second, to summarize themes about the potential contributions, and barriers to those contributions, of national strategies for electronic health records for population health monitoring and research and barriers that emerged from key informant interviews with experts in the same four countries; third to summarize themes emerging from key informant interviews with U.S. experts; and fourth, to delineate major fundamental issues in the relationship between national strategies for electronic health records and population health and monitoring." -.p. 1-21. Introduction -- 2. Methods -- 3. Factors impacting on national strategies for electronic health records -- 4. Nation snapshots: Australia, Canada, England, and New Zealand -- 5. Common themes in interviews with expert informants in Australia, Canada, England, and New Zealand -- 6. Common themes in interviews with expert informants in the U.S. -- 7. Fundamental issues in the relationship of national strategies for electronic health records to population health monitoring and research -- References -- Acronyms and glossary -- Tables -- Figures -- Appendix 1. Structured search criteria -- Appendix 2. Journals and newsletters reviewed -- Appendix 3.Typical interview guide (English expert) -- Appendix 4. Key informants"January 2006."Author: Daniel J. Friedman, Population and Public Health Information Services.Also available via the World Wide Web.Includes bibliographical references (p. 61-70)

Effects of EMR on Community Health Center Communication

Electronic medical record (EMR) systems impact healthcare communication in a significant number of ways. The physical presence of the EMR in the examination room can negatively impacts patient-provider communication. This research examined the impact of EMR on patient-provider communication within the microcosm of the community health center. The data for this research was collected via a quantitative survey using a random sample of 513 (10%) of the 5,101 patients of the Northwest Community Health Center (August 2021 to August 2022). These participants were at least 18 years of age and had seen their medical provider in the previous 12 months. Many themes arose from the research participants who were uncomfortable with the EMR or the use of technology in the exam room. Understanding the benefits or even the general functionality of the EMR allows the patient to feel more comfortable with its use and to become more tolerant of the presence and use of technology during the physician encounter. Furthermore, as the possession and use of current technologies diminishes amongst the study’s participants, so does their preference for their provider to use an EMR. To comprehend the impact EMR knowledge has on the patients’ perception of its utilization, a crosstabulation between staff and non-staff patients underlined the fundamental difference. When asked what type of chart they would prefer their medical provider to use, a quarter of non-staff patients preferred electronic medical records, whereas two-thirds of the staff, who are also patients of the community health center, preferred the same. These findings indicate a need to educate patients about the benefits of the EMR and the advantage of accessing the EMR in the exam room. Furthermore, enhancing the providers’ communication skills will help them comprehend the prevalent communication barriers created by accessing the EMR in the exam room. The quality of the interaction between the patient and provider is critical to the patient’s health outcomes. Improved communication leads to better emotional and physiological health, compliance with treatment recommendations, pain management, and symptom resolution

Examining the Impact of Design Features of Electronic Health Records Patient Portals on the Usability and Information Communication for Shared Decision Making

The use of the Electronic Health Records (EHR) patient portal has been shown to be effective in generating positive outcomes in patients’ healthcare, improving patient engagement and patient-provider communication. Government legislation also required proof of its meaningful use among patients by healthcare providers. Typical patient portals also include features such as health information and patient education materials. However, little research has examined the specific use of patient portals related to individuals with specific diseases such as inflammatory bowel diseases (IBDs). IBDs are life-long, not curable, chronic diseases that can impact the whole population. Individuals with IBDs may have higher needs to acquire health information from their EHR portals to properly self-manage their health conditions. The research aims of the present dissertation are to understand the online health information-seeking behaviors of a target group (IBDs) of patients, the use of EHR patient portals, and the impact of design features of EHR patient portals on the usability and information communication for shared decision making. Through this dissertation, I conducted four studies to address the above research aims. First, I identified how individuals with inflammatory bowel disease (IBD) used the internet for health information seeking, the factors impacting their use of the internet to obtain health information, and how they used the internet for health-related tasks. The purpose of this study is to get a general understanding of the online health information-seeking behaviors and to guide the study of health information presentation of EHR portals in the following research. Second, I examined what factors influenced an EHR patient portal user to believe that the portal is a valuable part of their health care. This part of the dissertation aimed to reveal the critical design factors that help design an EHR portal perceived as valuable in managing health. Third, I looked at how patients used EHR patient portals, what features of the portals facilitated their use and encouraged Shared Decision Making (SDM) and engagement in health management and what features acted as barriers to SDM and their engagement in health management. This part of my dissertation focused on a broad understanding of EHR portals usage by introducing more specific factors such as features of EHR portals. Fourth, I conducted an eye-tracking study to examine how information presentation methods and chatbots impact the use and effect of patient portals. This part of my dissertation built on the other studies within my dissertation and deepened the understanding of the influence of different EHR portal designs on their effectiveness and people’s willingness to participate in SDM. The results of this dissertation contribute to the literature of understanding the information-seeking behaviors of IBD patients and the use of portals, as well as the design considerations of how to make a suitable EHR portal to support the information-seeking needs of IBD patients. The results of this dissertation can be used to guide building proper patient education materials to support their health information needs of their specific health condition, especially for individuals with chronic diseases that require a certain amount of self-management. Meanwhile, examining artificial intelligence (AI) based chatbots use in EHR portals reveals a potential path of AI use in healthcare, such as information acquisition and patient education. Designing good usable EHR may also facilitate the process of informing patients of the advantages and disadvantages of treatment plans for their disease and, therefore, may increase their willingness to participate in SDM

Leveraging Knowledge-Based Approaches to Promote Antiretroviral Toxicity Monitoring in Underserved Settings

As access and use of antiretroviral therapy continue to increase, the need to improve antiretroviral toxicity monitoring becomes more critical. This is particularly so in underserved settings, where patterns of antiretroviral toxicities possibly alter the need for and frequency of antiretroviral toxicity monitoring. However, barriers such as few skilled healthcare providers and poor infrastructure make antiretroviral toxicity monitoring in underserved settings difficult. The purpose of this dissertation was to investigate how standard clinical guidelines, knowledge-based clinical decision support, and task delegation could be leveraged to overcome barriers to antiretroviral toxicity monitoring in underserved settings. The strategy adopted in this dissertation was guided by the Design Science Research Methodology that emphasizes the generation of scientific knowledge through building novel artifacts. Two qualitative descriptive studies were conducted to characterize the contextual factors associated with antiretroviral toxicity monitoring in underserved settings. Supported by the findings from these studies, a knowledge-based software application prototype that implements clinical practice guidelines for antiretroviral toxicity monitoring was developed. Next, a quantitative validation study was used to evaluate the structure and behavior of the prototype’s knowledge base. Lastly, a quantitative usability study was conducted to assess lay health worker perceptions of the satisfaction and mental effort associated with the use of checklists generated by the prototype. This dissertation research produced empirical evidence about the broad motives and strategies for promoting medication adherence, safety, and effectiveness in underserved settings. It also identified barriers and facilitators of antiretroviral toxicity monitoring within ambulatory HIV care workflows in underserved settings. Additionally, it provided evidence about the extent to which antiretroviral toxicity domain knowledge could be implemented in a knowledge-based application for supporting point-of-care antiretroviral toxicity monitoring. Lastly, the research provided previously unavailable empirical evidence about the perceptions of lay peer health workers on the use of checklists for the documentation of antiretroviral toxicities