A guidance document from the Research Innovations Workgroup of the PCORnet Research Committee. Published: September 4, 2018 Authors: Tim Carey, Tom Carton, Elizabeth Cope, Sue Friedman, Rebecca Moultrie, Jamie Roberts, and Frances Weaver
“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). Published: November 4, 2016
This presentation examined 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. Download the presentation. Watch the recording. Presented: November 13, 2017 Speakers: Dr. Holly Peay, RTI, Dr. Erin Rothwell, University of Utah, David Borasky, WIRB-Copernicus […]
Protecting the privacy of patients while using their medical records is an important issue in today’s research world. This webinar discusses the design and development of an operational privacy protecting record linkage tool. Presented: April 29, 2015 Speaker: Dr. Abel Kho, CAPriCORN
This presentation gave an overview of how PROMIS can provide reliable, flexible, and responsible treatment options to patients across multiple health domains. Presented on January 15, 2015 Speaker: Dr. David Cella, CAPriCORN
This presentation goes over the differences between intellectual property and data, Open Access, attributions, and CC licenses. Presented: January 26, 2015 Speaker: John Wilbanks
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. Presented on April 9, 2015 Speaker: Ty Rorick, DCRI
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. Presented: March 16, 2015 Speakers: Dr. Darren Toh, Harvard Medical School/Harvard Pilgrim Health Care Institute Dr. Lingling Li, Harvard Medical School/Harvard Pilgrim Health […]
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. Presented: May 6, 2015 Speaker: Dr. Tom Carton, REACHnet