Archiving the Phenome: Clinical Records Deserve Long-term Preservation

Corn, Milton

doi:10.1197/jamia.m2925

Cited by 20 publications

(10 citation statements)

References 4 publications

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“…Archived medical information is a rich source of data for research; however, there are inherent limitations with this methodological approach. Medical records are built on the observations of other people and, frequently, on the observations of many people (Corn, ; Worster & Haines, ). Archived medical records may be incomplete or illegible, resulting in inaccurate interpretation of the data by researchers.…”

Section: Limitationsmentioning

confidence: 99%

Continuous access to medication and health outcomes in uninsured adults with type 2 diabetes

Toulouse

Kodadek

2016

Journal of the American Association of Nurse Practitioners

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Background and purpose Achievement of recommended targets for HbA1c, low‐density lipoproteins (LDLs), and blood pressure (BP) improves outcomes in adults with diabetes. To meet targets, access to an affordable and consistent supply of medication is necessary, which can be challenging for the medically underserved. The Social Determinants of Health (SDOH) framework guided variable selection in this study, which explored the relationship between continuous access to medication and HbA1c, LDL, and BP in adults with type 2 diabetes who are uninsured and of low socioeconomic status. Methods This study was conducted using archived medical record data and a convenience sample of adults (n = 65) who received health care on a mobile health van and medications from a pharmaceutical procurement program. Pre–post data were analyzed using dependent t‐tests. Conclusions Continuous access to medication was related to improved HbA1c (p = .003), LDL (p = .004), and systolic BP (p = .025). Access to a consistent source of medications for chronic disease is related to improved health outcomes. Practice implications Knowledge was gained about the effect of improved access, nontraditional healthcare delivery systems, and improved outcomes related to collaboration among community partners. Interventions aimed at the wider SDOH may reduce disparities of the medically underserved.

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Section: Limitationsmentioning

confidence: 99%

Continuous access to medication and health outcomes in uninsured adults with type 2 diabetes

Toulouse

Kodadek

2016

Journal of the American Association of Nurse Practitioners

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“…Therefore, a goal of many NLP researchers is to create a shareable repository of clinical notes that has breadth (from multiple institutions) as well as depth (as much longitudinal data as possible from individuals). Corn noted the need to preserve the “clinical phenome,” which inspired much of our work here [1]. A corpus of clinical notes would enable robust testing of clinical NLP tools created at different institutions, something extremely difficult to do under the widely acknowledged constraints [2, 3] imposed on cross-institutional research by the Health Insurance Portability and Accountability Act (HIPAA).…”

Section: Introductionmentioning

confidence: 99%

A two-site survey of medical center personnel’s willingness to share clinical data for research: implications for reproducible health NLP research

Weng

Friedman

Rommel

et al. 2019

BMC Med Inform Decis Mak

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Background A shareable repository of clinical notes is critical for advancing natural language processing (NLP) research, and therefore a goal of many NLP researchers is to create a shareable repository of clinical notes, that has breadth (from multiple institutions) as well as depth (as much individual data as possible). Methods We aimed to assess the degree to which individuals would be willing to contribute their health data to such a repository. A compact e-survey probed willingness to share demographic and clinical data categories. Participants were faculty, staff, and students in two geographically diverse major medical centers (Utah and New York). Such a sample could be expected to respond like a typical potential participant from the general public who is given complete and fully informed consent about the pros and cons of participating in a research study. Results Two thousand one hundred forty respondents completed the surveys. 56% of respondents were “somewhat/definitely willing” to share clinical data with identifiers, while 89% of respondents were “somewhat (17%)/definitely willing (72%)” to share without identifiers. Results were consistent across gender, age, and education, but there were some differences by geographical region. Individuals were most reluctant (50–74%) sharing mental health, substance abuse, and domestic violence data. Conclusions We conclude that a substantial fraction of potential patient participants, once educated about risks and benefits, would be willing to donate de-identified clinical data to a shared research repository. A slight majority even would be willing to share absent de-identification, suggesting that perceptions about data misuse are not a major concern. Such a repository of clinical notes should be invaluable for clinical NLP research and advancement.

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“…UPDB links EHRs data to government datasets, such as birth and death certificates, census record, geospatial data, and social determinants of health. Creating a "tapestry" of information sources allows for a wealth of measurement on factors influencing health and disease, identification of sensitive windows of exposure, and targets for prevention [46]. EHRs linked to government datasets, such as birth and death certificates, census records, geospatial data, and social determinants of health, as well as other large data (e.g., school, child welfare, and employment records).…”

Section: Integrate Datasets Across the Lifespanmentioning

confidence: 99%

Charting the life course: Emerging opportunities to advance scientific approaches using life course research

Hanson

Leiser

Bandoli

et al. 2020

J. Clin. Trans. Sci.

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Life course research embraces the complexity of health and disease development, tackling the extensive interactions between genetics and environment. This interdisciplinary blueprint, or theoretical framework, offers a structure for research ideas and specifies relationships between related factors. Traditionally, methodological approaches attempt to reduce the complexity of these dynamic interactions and decompose health into component parts, ignoring the complex reciprocal interaction of factors that shape health over time. New methods that match the epistemological foundation of the life course framework are needed to fully explore adaptive, multilevel, and reciprocal interactions between individuals and their environment. The focus of this article is to (1) delineate the differences between lifespan and life course research, (2) articulate the importance of complex systems science as a methodological framework in the life course research toolbox to guide our research questions, (3) raise key questions that can be asked within the clinical and translational science domain utilizing this framework, and (4) provide recommendations for life course research implementation, charting the way forward. Recent advances in computational analytics, computer science, and data collection could be used to approximate, measure, and analyze the intertwining and dynamic nature of genetic and environmental factors involved in health development.

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Archiving the Phenome: Clinical Records Deserve Long-term Preservation

Cited by 20 publications

References 4 publications

Continuous access to medication and health outcomes in uninsured adults with type 2 diabetes

Continuous access to medication and health outcomes in uninsured adults with type 2 diabetes

A two-site survey of medical center personnel’s willingness to share clinical data for research: implications for reproducible health NLP research

Charting the life course: Emerging opportunities to advance scientific approaches using life course research

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