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.
Participant feedback will be instrumental in the development and finalization of MINDFIRL and the IRB application template that will accompany the MINDFIRL software once it is released. It will also help inform IRB template language for communicating and quantifying the remaining privacy risk.
Participants in this study will:
- Learn about a new software called MINDFIRL (Minimum Necessary Disclosure For Interactive Record Linkage), which is designed to give researchers the ability to disclose only the information necessary to make matching decisions in database studies.
- Engage in a three-round Delphi session with Dr. Kum, Dr. Ferdinand, and Professor Schmit, which will be held in an online plaform. Participants will have the opportunity to share general feedback, comments, concerns, and suggestions for improving the IRB prototype application based on their expertise.
The reseachers will gather the feedback on the IRB application and revise the application as appropriate until consensus on its content is reached.
Participants will be given seven days to complete each round at their own pace. It is estimated that participants will need between 2-3 hours to complete each round. Participants will receive graduated payments of $20 for the first round, $30 for the second round, and $50 for the third round, totaling $100 as compensation for participation.
For questions or additional information , please contact Theo Giannouchos, PhD, student in Health Services Research at Texas A&M University, at firstname.lastname@example.org.
Dr. Hye-Chung Kum, PhD, is cross-trained in computer science and social work, and is an expert in data science. Dr. Alva O. Ferdinand, DrPH, JD, is cross-trained in public health and law and has expertise in using large secondary data sources for population-level research. Professor Cason Schmit, JD, has served in compliance roles and has studied the role of law in data health systems.
This study is funded by the Patient-Centered Outcomes Research Institute (PCORI), a non-profit organization that funds research to help patients and those who care for them make better-informed decisions about their healthcare choices.