Study Details

We are conducting interviews and surveys with professionals who review research and with members of the public.

Our study will help policy makers to make recommendations about how to conduct Research on Medical Practices ethically and how to communicate with patients about it.

Main study questions:

• What do people think about the risks and benefits of Research on Medical Practices?
• What do people think about different approaches to letting patients know this type of research is being conducted?

The RoMP study began in October 2013.

Completed Activities:

• Conducted focus groups with IRB members at the University of Washington, Seattle Children’s, and Stanford.
• Developed a survey for IRB professionals.
• In collaboration with Public Responsibility in Medicine and Research (PRIM&R), surveyed a sample of IRB survey to PRIM&R members.
• Conducted focus groups with patients and parents at the University of Washington, Seattle Children’s, and Stanford.
• In collaboration with Booster Shot Media, developed three informational videos for use in the patient/public survey.
• Developed a patient/public survey.
• In collaboration with Turner Research, surveyed a nationally representative population group.

Planned Activities:

• In collaboration with Providence Health System, survey select individuals in Spokane, Washington, who have complex healthcare problems (Sept-Nov 2014).
• Conduct interviews with IRB professionals (Oct-Dec 2014).
• Conduct interviews with members of the public (Oct-Dec 2014).
• Publish our finding to inform policy recommendations to the U.S. Office for Human Research Protections (OHRP).

Study Instruments:

• IRB Focus Group Guide
• Patient Focus Group Guide
• General Population and Patient Survey
• PRIM&R Member Survey

References and Resources:
Read more about this project in the ITHS Research Connector newsletter (Spring 2014).
Complete list of references: ROMP Ethics Study References.