TAG ARCHIVES FOR patient-centered outcomes research

20
Dec2018

Three researchers at the Texas A&M University School of Public Health—Hye-Chung Kum, PhD; Alva O. Ferdinand, DrPH, JD; and Cason Schmit, JD—invite ethical, legal, and social implications (ELSI) experts to participate in a three-round Delphi study. The purpose of the study is to design an IRB application template for patient-centered comparative effectiveness research that requires record linkage. The researchers are currently seeking feedback on their prototype software,  called Minimum Necessary Disclosure for Interactive Record Linkage (MINDFIRL), which is designed to mimimize identity disclosure via controlled information disclosure. Read more

9
Nov2018

In 2010, a little-known research institute, the Patient Centered Outcomes Research Institute (PCORI), began funding hundreds of clinical studies with the aim of increasing the value of medical innovation. These studies included patients and family members in every step of the research process. This approach, called patient-centered outcomes research, has become a novel tool for conducting health care investigations; but, it raises ethical issues, which have largely been pushed to the background. Read more

24
Aug2017

On March 1, 2017, PRIM&R held a day-long Ethics of Data Access, Use, and Sharing for Human Subjects Research Workshop in partnership with the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard University (MRCT Center). I am pleased to announce that the proceedings and other information from the day are now available on PRIM&R’s website. Read more