Should Electronic Health Record-Derived Social and Behavioral Data Be Used in Precision Medicine Research?

Hollister, Brittany M.; Bonham, Vence L.

doi:10.1001/amajethics.2018.873

Cited by 23 publications

(8 citation statements)

References 25 publications

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“…Some consider ethical issues that are associated with characteristics common to all EPR systems such as the nature of digital data [ 32 , 60 , 61 ], the confidentiality of health information [ 33 , 39 ] or the use of the copy-paste functionality [ 38 , 62 , 63 ]. Others focus on ethical issues around a particular EPR use, such as health insurance claims [ 64 ], clinical governance [ 65 ], medical education [ 35 , 66 – 69 ], health research [ 36 , 70 – 73 ], predictive analytics [ 74 ], learning health system [ 41 ], genomics, biomarkers and photos [ 31 , 34 , 75 – 78 ], public health policies or surveillance [ 79 – 81 ], health service monitoring, evaluation and planning [ 82 , 83 ]. The concept of providing patients access to their own medical record via electronic portals was of interest in many sources, particularly in relation to patients understanding the content of the record, provision of sufficient controls for patients to manage privacy, and patient responsibility for the accuracy of information in their healthcare record [ 31 , 37 , 84 – 92 ].…”

Section: Resultsmentioning

confidence: 99%

Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review

Jacquemard¹,

Doherty

Fitzsimons³

2020

BMC Med Ethics

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Background: Electronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain. Methods: To identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology. Results: The medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters 'privacy', 'autonomy', 'risk/ benefit', 'human relationships', and 'responsibility'. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved. Conclusions: While there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns.

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Section: Resultsmentioning

confidence: 99%

Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review

Jacquemard¹,

Doherty

Fitzsimons³

2020

BMC Med Ethics

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“…2. Use of self-reported data, as well as data amalgamated from multiple sources, has raised questions about data quality in precision medicine research (Hollister & Bonham, 2018).…”

Section: Declaration Of Conflicting Interestsmentioning

confidence: 99%

Communicating Scientific Uncertainty Across the Dissemination Trajectory: A Precision Medicine Case Study

Ratcliff

2021

Science Communication

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This study provides an in-depth analysis of how scientific uncertainty was conveyed along the dissemination pathway for a novel discovery linking genomic markers to depression risk. In this article, knowledge limitations described in the original scientific paper were mostly omitted from press releases, and a majority of news coverage mirrored press release content. However, the affiliated scientists depicted uncertainty to different degrees, appearing to influence the tenor of each institution’s press release and the news reports for which they were interviewed or quoted. News reports sometimes conveyed more caveats than the original scientific report. This case study presents detailed examples of uncertainty representations in the emerging domain of precision medicine, organized by a typology to guide future research.

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“…Health systems have already started implementing these activities, but research regarding the impact of these activities on health outcomes is limited. Importantly, the unintended consequences of these activities, including the potential for perpetuating bias and further marginalizing vulnerable populations, are poorly understood [ 2 , 11 , 12 ]. EHR data, particularly clinician notes, maybe a rich source of secondary data that provides some important insight into how clinicians are currently responding to social needs and the consequences of their responses.…”

Section: Introductionmentioning

confidence: 99%

Linking Electronic Health Records and In-Depth Interviews to Inform Efforts to Integrate Social Determinants of Health Into Health Care Delivery: Protocol for a Qualitative Research Study

Hirsch¹,

Durden²,

Silva³

2022

JMIR Res Protoc

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Background Health systems are attempting to capture social determinants of health (SDoH) in electronic health records (EHR) and use these data to adjust care plans. To date, however, methods for identifying social needs, which are the SDoH prioritized by patients, have been underexplored, and there is little guidance as to how clinicians should act on SDoH data when caring for patients. Moreover, the unintended consequences of collecting and responding to SDoH are poorly understood. Objective The objective of this study is to use two data sources, EHR data and patient interviews, to describe divergences between the EHR and patient experiences that could help identify gaps in the documentation of SDoH in the EHR; highlight potential missed opportunities for addressing social needs, and identify unintended consequences of efforts to integrate SDoH into clinical care. Methods We are conducting a qualitative study that merges discrete and free-text data from EHRs with in-depth interviews with women residing in rural, socioeconomically deprived communities in the Mid-Atlantic region of the United States. Participants had to confirm that they had at least one visit with the large health system that serves the region. Interviews with the women included questions regarding health, interaction with the health system, and social needs. Next, with consent, we extracted discrete data (eg, diagnoses and medication orders) for each participant and free-text clinician notes from this health system’s EHRs between 1996 and the year of the interview. We used a standardized protocol to create an EHR narrative, a free-text summary of the EHR data. We used NVivo to identify themes in the interviews and the EHR narratives. Results To date, we have interviewed 88 women, including 51 White women, 19 Black women, 14 Latina women, 2 mixed Black and Latina women, and 2 Asian Pacific women. We have completed the EHR narratives on 66 women. The women range in age from 18 to 90 years. We found corresponding EHR data on all but 4 of the interview participants. Participants had contact with a wide range of clinical departments (eg, psychiatry, neurology, and infectious disease) and received care in various clinical settings (eg, primary care clinics, emergency departments, and inpatient hospitalizations). A preliminary review of the EHR narratives revealed that the clinician notes were a source of data on a range of SDoH but did not always reflect the social needs that participants described in the interviews. Conclusions This study will provide unique insight into the demands and consequences of integrating SDoH into clinical care. This work comes at a pivotal point in time, as health systems, payors, and policymakers accelerate attempts to deliver care within the context of social needs. International Registered Report Identifier (IRRID) DERR1-10.2196/36201

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Should Electronic Health Record-Derived Social and Behavioral Data Be Used in Precision Medicine Research?

Cited by 23 publications

References 25 publications

Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review

Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review

Communicating Scientific Uncertainty Across the Dissemination Trajectory: A Precision Medicine Case Study

Linking Electronic Health Records and In-Depth Interviews to Inform Efforts to Integrate Social Determinants of Health Into Health Care Delivery: Protocol for a Qualitative Research Study

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