Participate in a research study on human subject protection and information privacy in retrospective database studies

Are you attending the 2017 Advancing Ethical Research Conference? Would you like to participate in a research study to discuss the risks and benefits of conducting record linkage studies during the conference? If so, please join us for lunch and discussions on Nov 5th (Sunday), 12:00-1:30pm in the Henry B. Gonzalez Convention Center Room 005 (on the River Level of the Convention Center.)

The goal of this project is to understand the perceived risks and benefits during the record linkage process in retrospective database studies. 

The study will involve using a short online interactive tutorial (20 minutes) to answer a series of questions based on the data you see on the screen. You will learn about the basics of record linkage and the impact of controlling the amount of information disclosed during the process. Following the tutorial, we will hold a nominal group technique (NGT) session to build consensus on the risk and benefits of record linkage studies using the information disclosure framework that you experienced.

No particular expertise is required to participate.  

The entire study will last approximately 90 minutes. You will receive a $25 Amazon gift card plus a chance to win an additional $100 Amazon gift card through a lottery.

For more details, you can read more about the study here.

Please sign up to participate in the Google form here.

Who is conducting the research?
The study is being conducted at the Population Informatics Lab at Texas A&M University with funding from the Patient-Centered Outcomes Research Institute (PCORI), a non-profit organization that funds research in order to help patients and those who care for them make better-informed decisions about their healthcare choices. Dr. Hye-Chung Kum is an associate professor at Texas A&M University and is cross-trained in computer science and social work. Dr. Kum holds expertise in data science and data mining in support of accurate evidence-based decisions for policy, management, legislation, evaluation and research. Dr. Alva O. Ferdinand is an assistant professor at Texas A&M University and is cross-trained in public health (DrPH) and law (JD) with expertise in using large secondary data sources for population-level research. Drs. Kum and Ferdinand will be joined by Professor Cason Schmit, who is also an assistant professor at Texas A&M University and the HIPAA compliance officer at the university’s School of Public Health. The research team consists of avid researchers and experts in the role of law and data in health systems.  You can read more about their work at the web addresses listed below:

Hye-Chung Kum, PhD

Alva O. Ferdinand, DrPH, JD

Cason Schmit, JD

For additional information regarding the study, please contact Theo Giannouchos at