Dataset Information

Confidential genetic testing and electronic health records: A survey of current practices among Huntington disease testing centers.

ABSTRACT: BACKGROUND:Clinical care teams providing presymptomatic genetic testing often employ advanced confidentiality practices for documentation and result storage. However, patient requests for increased confidentiality may be in conflict with the legal obligations of medical providers to document patient care activities in the electronic health record (EHR). Huntington disease presents a representative case study for investigating the ways centers currently balance the requirements of EHRs with the privacy demands of patients seeking presymptomatic genetic testing. METHODS:We surveyed 23 HD centers (53% response rate) regarding their use of the EHR for presymptomatic HD testing. RESULTS:Our survey revealed that clinical care teams and laboratories have each developed their own practices, which are cumbersome and often include EHR avoidance. We found that a majority of HD care teams record appointments in the EHR (91%), often using vague notes. Approximately half of the care teams (52%) keep presymptomatic results of out of the EHR. CONCLUSION:As genetic knowledge grows, linking more genes to late-onset conditions, institutions will benefit from having professional recommendations to guide development of policies for EHR documentation of presymptomatic genetic results. Policies must be sensitive to the ethical differences and patient demands for presymptomatic genetic testing compared to those undergoing confirmatory genetic testing.

SUBMITTER: Eno CC

PROVIDER: S-EPMC6978271 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Confidential genetic testing and electronic health records: A survey of current practices among Huntington disease testing centers.

Eno Celeste C CC Barton Stacey K SK Dorrani Naghmeh N Cederbaum Stephen D SD Deignan Joshua L JL Grody Wayne W WW

Molecular genetics & genomic medicine 20191107 1

<h4>Background</h4>Clinical care teams providing presymptomatic genetic testing often employ advanced confidentiality practices for documentation and result storage. However, patient requests for increased confidentiality may be in conflict with the legal obligations of medical providers to document patient care activities in the electronic health record (EHR). Huntington disease presents a representative case study for investigating the ways centers currently balance the requirements of EHRs wi ...[more]

PMID: 31701651

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Project description:BackgroundPolicies promoting widespread adoption of electronic medical records (EMRs) are premised on the hope that they can improve the coordination of care. Yet little is known about whether and how physician practices use current EMRs to facilitate coordination.ObjectivesWe examine whether and how practices use commercial EMRs to support coordination tasks and identify work-around practices have created to address new coordination challenges.Design, settingSemi-structured telephone interviews in 12 randomly selected communities.ParticipantsSixty respondents, including 52 physicians or staff from 26 practices with commercial ambulatory care EMRs in place for at least 2 years, chief medical officers at four EMR vendors, and four national thought leaders.ResultsSix major themes emerged: (1) EMRs facilitate within-office care coordination, chiefly by providing access to data during patient encounters and through electronic messaging; (2) EMRs are less able to support coordination between clinicians and settings, in part due to their design and a lack of standardization of key data elements required for information exchange; (3) managing information overflow from EMRs is a challenge for clinicians; (4) clinicians believe current EMRs cannot adequately capture the medical decision-making process and future care plans to support coordination; (5) realizing EMRs' potential for facilitating coordination requires evolution of practice operational processes; (6) current fee-for-service reimbursement encourages EMR use for documentation of billable events (office visits, procedures) and not of care coordination (which is not a billable activity).ConclusionsThere is a gap between policy-makers' expectation of, and clinical practitioners' experience with, current electronic medical records' ability to support coordination of care. Policymakers could expand current health information technology policies to support assessment of how well the technology facilitates tasks necessary for coordination. By reforming payment policy to include care coordination, policymakers could encourage the evolution of EMR technology to include capabilities that support coordination, for example, allowing for inter-practice data exchange and multi-provider clinical decision support.

Dataset Information

Confidential genetic testing and electronic health records: A survey of current practices among Huntington disease testing centers.

Publications

Confidential genetic testing and electronic health records: A survey of current practices among Huntington disease testing centers.

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