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An Ethics Framework for a Learning Health Care System: A Departure from Traditional Research Ethics and Clinical Ethics
Title | Author | Date | Source |
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Evaluating re-identification risks with respect to the HIPAA privacy rule | Kathleen Benitez and Bradley Malin | December 14, 2009 | Journal of the American Medical Informatics Association |
First, design for data sharing | John Wilbanks and Stephen H Friend | March 3, 2016 | Nature Biotechnology |
Malin helps craft de-identification guidelines | Paul Govern | December 6, 2012 | VUMC Reporter |
Extending comparative effectiveness research and medical product safety surveillance capability through linkage of administrative claims data with electronic health records: A Sentinel-PCORnet collaboration | Haynes et al. | November 24, 2015 | U.S. Food and Drug Administration (FDA) (Sentinel Initiative) PCORI (PCORnet) |
The Deidentification Dilemma: A Legislative and Contractual Proposal | Robert Gellman | January 4, 2011 | Fordham Intellectual Property, Media and Entertainment Law Journal |
Registries for Evaluating Patient Outcomes: A User’s Guide | Outcome Sciences, Inc. | April 2014 | The Effective Health Care Program (AHRQ) |
An Ethics Framework for a Learning Health Care System: A Departure from Traditional Research Ethics and Clinical Ethics | Faden et al. | January-February 2013 | Hastings Center |
Linking Users Across Domains with Location Data: Theory and Validation | Riederer et al. | April 11–15, 2016 | WWW '16 Proceedings of the 25th International Conference on World Wide Web |
Patient Identification and Matching Final Report | Audacious Inquiry | February 7, 2014 | ONC |
Human Subjects Research Implications of “Big Data” Studies | | | SACHRP |
Consumer Consent Options for Electronic Health Information Exchange: Policy Considerations and Analysis | Melissa Goldstein and Alison Rein | March 23, 2010 | ONC |
Standards in the Use of Collaborative or Distributed Data Networks in Patient Centered Outcomes Research | | March 15, 2012 | |
Public policy for "Privacy, Anonymity and Big Data" requires combined technical and legal solutions | Daniel Barth-Jones | September 8, 2014 | FireceBigData |
Big Data: A New Paradigm for Health Plan Oversight and Consumer Protection? | Sabrina Corlette, Sandy Ahn, and JoAnn Volk | August 2015 | Center on Health Insurance Reforms, Georgetown University McCourt School of Public Policy |
Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule | Office for Civil Rights (OCR) | November 26, 2012 | HHS |