Reg-ent within the Learning Health System

Otolaryngology--head and Neck Surgery : Official Journal of American Academy of Otolaryngology-Head and Neck Surgery
Kayte Spector-Bagdady, Andrew G Shuman

Abstract

Clinical data registries are perhaps one of the most powerful outcomes of electronic medical records, and their benefits are projected to redound to patients and clinicians across the nation. The American Academy of Otolaryngology-Head and Neck Surgery Foundation's Reg-ent fits within the conceptual framework of a learning health system. Because the data within this system are deidentified, research informed consent is not legally required. But ethical concerns remain regarding whether and how to best notify, and whether to obtain consent from, patients whose data are included. Particularly because data corroborate that a substantial minority of survey respondents believe that consent should be obtained for each research protocol (even for deidentified research) and because data breaches are, unfortunately, a serious risk, we recommend that the American Academy of Otolaryngology-Head and Neck Surgery Foundation ensure best practices for patient engagement as it continues to build Reg-ent.

References

Jul 3, 2016·Otolaryngology--head and Neck Surgery : Official Journal of American Academy of Otolaryngology-Head and Neck Surgery·Angela M BellmuntJennifer J Shin
Jan 25, 2017·Journal of Oncology Practice·Rachel M MayoReshma Jagsi
Jan 25, 2017·Journal of Oncology Practice·Rochelle D JonesReshma Jagsi
Apr 21, 2017·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Joshua D SmithAndrew G Shuman
May 26, 2017·Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology·Reshma JagsiAngela R Bradbury
Sep 15, 2017·JAMA Facial Plastic Surgery·C Alessandra ColaianniRobin W Lindsay
Jan 9, 2018·Health and Technology·Julia Powles, Hal Hodson

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Citations

May 22, 2020·JAMA Otolaryngology-- Head & Neck Surgery·Roy XiaoMark A Varvares
Jan 9, 2019·Nature Medicine·W Nicholson Price, I Glenn Cohen
Feb 2, 2019·Science·W Nicholson PriceKayte Spector-Bagdady
Apr 21, 2021·Otolaryngology--head and Neck Surgery : Official Journal of American Academy of Otolaryngology-Head and Neck Surgery·Taylor C StandifordJeffrey E Terrell

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