Disclosing Genetic Risk for Coronary Heart Disease: Attitudes Toward Personal Information in Health Records

Brown, Sherry‐Ann; Jouni, Hayan; Marroush, Tariq S.; Kullo, Iftikhar J.

doi:10.1016/j.amepre.2016.11.005

“…The substantial learnings from previously established programs, such as the Electronic Medical Record and Genomics (eMERGE) network on approaches to integrate genomic variant information within electronic medical records, will be incorporated into PMI protocols [31,32]. Researchers are also working on integrative models based on current knowledge of genomics and epigenomics and the relevant biochemistry and cellular-tissue physiology to predict how to obtain data from these very large cohorts.…”

Section: €360 Millionmentioning

confidence: 99%

A Review of Recent Advances in Translational Bioinformatics: Bridges from Biology to Medicine

Vamathevan¹,

Birney²

2017

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SummaryObjectives: To highlight and provide insights into key developments in translational bioinformatics between 2014 and 2016. Methods: This review describes some of the most influential bioinformatics papers and resources that have been published between 2014 and 2016 as well as the national genome sequencing initiatives that utilize these resources to routinely embed genomic medicine into healthcare. Also discussed are some applications of the secondary use of patient data followed by a comprehensive view of the open challenges and emergent technologies. Results: Although data generation can be performed routinely, analyses and data integration methods still require active research and standardization to improve streamlining of clinical interpretation. The secondary use of patient data has resulted in the development of novel algorithms and has enabled a refined understanding of cellular and phenotypic mechanisms. New data storage and data sharing approaches are required to enable diverse biomedical communities to contribute to genomic discovery. Conclusion: The translation of genomics data into actionable knowledge for use in healthcare is transforming the clinical landscape in an unprecedented way. Exciting and innovative models that bridge the gap between clinical and academic research are set to open up the field of translational bioinformatics for rapid growth in a digital era.

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“…The goals of the program included developing criteria and standards for the incorporation of rapidly evolving technology and mobile health technologies into cohort design, both for baseline and ongoing data collection, as well as interoperable and standardized EHRs plus various genomics and imaging approaches 7 . 6 http://www.sciencemag.org/ news/2016/07/president-obama-s-1-million-person-health-study-kicks-fiverecruitment-centers 7 https://www.nih.gov/sites/default/files/ research-training/initiatives/pmi/pmiworking-group-report-20150917-2.pdf The substantial learnings from previously established programs, such as the Electronic Medical Record and Genomics (eMERGE) network on approaches to integrate genomic variant information within electronic medical records, will be incorporated into PMI protocols [31,32]. Researchers are also working on integrative models based on current knowledge of genomics and epigenomics and the relevant biochemistry and cellular-tissue physiology to predict how to obtain data from these very large cohorts.…”

Section: National Sequencing Initiatives: Approach and Progressmentioning

confidence: 99%

A Review of Recent Advances in Translational Bioinformatics: Bridges from Biology to Medicine

Vamathevan¹,

Birney²

2017

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SummaryObjectives: To highlight and provide insights into key developments in translational bioinformatics between 2014 and 2016. Methods: This review describes some of the most influential bioinformatics papers and resources that have been published between 2014 and 2016 as well as the national genome sequencing initiatives that utilize these resources to routinely embed genomic medicine into healthcare. Also discussed are some applications of the secondary use of patient data followed by a comprehensive view of the open challenges and emergent technologies. Results: Although data generation can be performed routinely, analyses and data integration methods still require active research and standardization to improve streamlining of clinical interpretation. The secondary use of patient data has resulted in the development of novel algorithms and has enabled a refined understanding of cellular and phenotypic mechanisms. New data storage and data sharing approaches are required to enable diverse biomedical communities to contribute to genomic discovery. Conclusion: The translation of genomics data into actionable knowledge for use in healthcare is transforming the clinical landscape in an unprecedented way. Exciting and innovative models that bridge the gap between clinical and academic research are set to open up the field of translational bioinformatics for rapid growth in a digital era.

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“…Electronic health records (EHRs) are being adopted in many health systems to improve the collection, sharing, and use of health care information [ 1 ]. Such information practices play a critical role in providing safe and high-quality care [ 2 , 3 ]. EHRs promise more integrated and connected health services, which are recognized by the World Health Organization and many governments as essential for sustainable, effective health systems [ 4 - 6 ].…”

Section: Introductionmentioning

confidence: 99%

Impact of Electronic Health Records on Information Practices in Mental Health Contexts: Scoping Review

Kariotis¹,

Prictor²,

Chang³

et al. 2022

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Background The adoption of electronic health records (EHRs) and electronic medical records (EMRs) has been slow in the mental health context, partly because of concerns regarding the collection of sensitive information, the standardization of mental health data, and the risk of negatively affecting therapeutic relationships. However, EHRs and EMRs are increasingly viewed as critical to improving information practices such as the documentation, use, and sharing of information and, more broadly, the quality of care provided. Objective This paper aims to undertake a scoping review to explore the impact of EHRs on information practices in mental health contexts and also explore how sensitive information, data standardization, and therapeutic relationships are managed when using EHRs in mental health contexts. Methods We considered a scoping review to be the most appropriate method for this review because of the relatively recent uptake of EHRs in mental health contexts. A comprehensive search of electronic databases was conducted with no date restrictions for articles that described the use of EHRs, EMRs, or associated systems in the mental health context. One of the authors reviewed all full texts, with 2 other authors each screening half of the full-text articles. The fourth author mediated the disagreements. Data regarding study characteristics were charted. A narrative and thematic synthesis approach was taken to analyze the included studies’ results and address the research questions. Results The final review included 40 articles. The included studies were highly heterogeneous with a variety of study designs, objectives, and settings. Several themes and subthemes were identified that explored the impact of EHRs on information practices in the mental health context. EHRs improved the amount of information documented compared with paper. However, mental health–related information was regularly missing from EHRs, especially sensitive information. EHRs introduced more standardized and formalized documentation practices that raised issues because of the focus on narrative information in the mental health context. EHRs were found to disrupt information workflows in the mental health context, especially when they did not include appropriate templates or care plans. Usability issues also contributed to workflow concerns. Managing the documentation of sensitive information in EHRs was problematic; clinicians sometimes watered down sensitive information or chose to keep it in separate records. Concerningly, the included studies rarely involved service user perspectives. Furthermore, many studies provided limited information on the functionality or technical specifications of the EHR being used. Conclusions We identified several areas in which work is needed to ensure that EHRs benefit clinicians and service users in the mental health context. As EHRs are increasingly considered critical for modern health systems, health care decision-makers should consider how EHRs can better reflect the complexity and sensitivity of information practices and workflows in the mental health context.

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Disclosing Genetic Risk for Coronary Heart Disease: Attitudes Toward Personal Information in Health Records

Cited by 10 publications

References 44 publications

A Review of Recent Advances in Translational Bioinformatics: Bridges from Biology to Medicine

A Review of Recent Advances in Translational Bioinformatics: Bridges from Biology to Medicine

A Review of Recent Advances in Translational Bioinformatics: Bridges from Biology to Medicine

Impact of Electronic Health Records on Information Practices in Mental Health Contexts: Scoping Review

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