“PCORnet Recommendations for SOGI Data Elements in CDM v3.1” was written by co-directors Dr. Mitchell Lunn and Dr. Juno Obedin-Maliver. It is based on research literature, our co-directors’ clinical and research expertise, and definitely informed by participant data in our pilot research (~18,000 enrolled participants).
This presentation, originally recorded on, November 13, 2017, looked at e-consent from several different perspectives. The presentation discussed different technologies used to obtain consent in different contexts. It details different guidelines as well as use of layered consent. Speakers: Dr. Holly Peay, RTI Dr. Erin Rothwell, University of Utah David Borasky, WIRB-Copernicus Group
Dr. Kho discussed how to protect and secure data online. He also explained the ongoing work to develop new security features. Speaker: Dr. Abel Kho, CAPriCORN PCORnet_Best_Practices_4_29_15 Presented on April 29, 2015
This presentation gave an overview of how PROMIS can provide reliable, flexible, and responsible treatment options to patients across multiple health domains. Speaker: Dr. David Cella, CAPriCORN PCORI Office Hours seminar_1-12-15_cella Presented on January 15, 2015
This presentation goes over the differences between intellectual property and data, Open Access, attributions, and CC licenses. Speaker: John Wilbanks pcori cc wilbanks ppt Presented on January 26, 2015
This office hours call gave others in PCORnet a chance to learn what the ADAPTABLE Study was, what progress had been made, and what the next steps were. Speaker: Ty Rorick, DCRI ADAPTABLE Inclusion ADAPTABLE 9FEB15 Presented on April 9, 2015
Dr. Toh and Dr. Li gave examples of research conducted within distributed networks with horizontally partitioned data. They then hosted a discussion and spoke about how vertically partitioned data could be useful to PCORnet. Speakers: Dr. Darren Toh, Harvard Medical School/Harvard Pilgrim Health Care Institute Dr. Lingling Li, Harvard Medical School/Harvard Pilgrim Health Care Institute Statistical analyses […]
This presentation helped answer the question, “How can we conduct pragmatic comparative effectiveness research more efficiently without sacrificing quality?” Tom Carton discussed the four potential solutions for multi-site pragmatic research, which included the Common Data Model, Pragmatic Trial App Suite, Global Patient ID, and Patient Network. Speaker: Dr. Tom Carton, REACHnet Final LaCDRN Best Practices […]
Protecting the privacy of patients while using their medical records is an important issue in today’s research world. This webinar, originally hosted on April 29th, 2015, discusses the design and development of an operational privacy protecting record linkage tool. Speakers: Dr.Abel Ko, CAPriCORN PCORnet BPSS Privacy Protecting Record Linkage tool. pdf