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

2019 ◽  
Vol 8 (1) ◽  
Author(s):  
Celeste C. Eno ◽  
Stacey K. Barton ◽  
Naghmeh Dorrani ◽  
Stephen D. Cederbaum ◽  
Joshua L. Deignan ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Electronic Health Records ◽  
Huntington Disease ◽  
Health Records ◽  
Electronic Health ◽  
Disease Testing ◽  
Current Practices

scholarly journals A survey of practices for the use of electronic health records to support research recruitment

2017 ◽  
Vol 1 (4) ◽  
pp. 246-252 ◽  
Author(s):  
Jihad S. Obeid ◽  
Laura M. Beskow ◽  
Marie Rape ◽  
Ramkiran Gouripeddi ◽  
R. Anthony Black ◽  
...  
Keyword(s):  
Electronic Health Records ◽  
Great Promise ◽  
Patient Portals ◽  
Health Records ◽  
Research Recruitment ◽  
Interinstitutional Collaboration ◽  
Electronic Health ◽  
Self Service ◽  
Service Data ◽  
Current Practices

Electronic health records (EHRs) provide great promise for identifying cohorts and enhancing research recruitment. Such approaches are sorely needed, but there are few descriptions in the literature of prevailing practices to guide their use. A multidisciplinary workgroup was formed to examine current practices in the use of EHRs in recruitment and to propose future directions. The group surveyed consortium members regarding current practices. Over 98% of the Clinical and Translational Science Award Consortium responded to the survey. Brokered and self-service data warehouse access are in early or full operation at 94% and 92% of institutions, respectively, whereas, EHR alerts to providers and to research teams are at 45% and 48%, respectively, and use of patient portals for research is at 20%. However, these percentages increase significantly to 88% and above if planning and exploratory work were considered cumulatively. For most approaches, implementation reflected perceived demand. Regulatory and workflow processes were similarly varied, and many respondents described substantive restrictions arising from logistical constraints and limitations on collaboration and data sharing. Survey results reflect wide variation in implementation and approach, and point to strong need for comparative research and development of best practices to protect patients and facilitate interinstitutional collaboration and multisite research.

Electronic health records: Context matters!

2016 ◽  
Vol 34 (2) ◽  
pp. 163-165 ◽  
Author(s):  
William B. Ventres ◽  
Richard M. Frankel
Keyword(s):  
Electronic Health Records ◽  
Health Records ◽  
Electronic Health
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