NDLI: Too Much or Too Little? How Much Control Should Patients Have Over EHR Data?

Content Provider	Springer Nature Link
Author	Bhuyan, Soumitra Sudip Bailey DeLeeuw, Sandra Wyant, David K. Chang, Cyril F.
Copyright Year	2016
Abstract	Electronic health records (EHRs) have been promoted as a mechanism to overcome the fragmented healthcare system in the United States. The challenge that is being discussed is the rights of the patient to control the access to their EHRs’ data and the needs of healthcare professionals to know health data to make the best treatment decisions for their patients. The Federal Trade Commission has asked those who store consumer information to comply with the Fair Information Practice Principles. In the EHR context, these principles give the rights to the patient to control who can see their health data and what components of the data are restricted from view. Control is not limited to patients, as it also includes parents of adolescent children. We suggest that the ongoing policy discussion include consideration of the precise questions patients will be asked when a need for data sharing arises. Further, patients should understand the relative risks that they face, and the degree to which their decisions will (or will not) significantly reduce the risk of a data breach. As various approaches are considered, it is important to address the relative resource requirements and the associated costs of each option.
Starting Page	1
Ending Page	4
Page Count	4
File Format	PDF
ISSN	01485598
Journal	Journal of Medical Systems
Volume Number	40
Issue Number	7
e-ISSN	1573689X
Language	English
Publisher	Springer US
Publisher Date	2016-06-06
Publisher Place	New York
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Electronic health records Patient privacy Data ownership Patient rights Consumer health information Patient data privacy Privacy of patient data Data sharing Health Informatics Statistics for Life Sciences, Medicine, Health Sciences
Content Type	Text
Resource Type	Article
Subject	Health Information Management Information Systems Health Informatics

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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