Chapter 16: MethodologyThe SIS included almost 1,900 patients at medical institutions across the country. To determine whether the experiences people had with radiation research were any different from those people had with nonradiation research, we interviewed patients in medical oncology, radiation oncology, and cardiology clinics. All of these patients participated in a Brief Survey (five to ten minutes). One hundred three of these patients, all of whom reported in the Brief Survey that they were research participants, also completed longer (roughly forty-five minutes) In-Depth Interviews, designed to give patients an opportunity to elaborate on their perceptions of research and their personal research experiences. Advisory Committee staff and consultants took primary responsibility for designing the SIS, recruiting institutions to participate in the study, conducting some of the interviews, and analyzing the data. Research Triangle Institute, a nonprofit organization, was hired to perform several tasks including conducting focus groups, piloting the interview instruments, conducting the majority of interviews, and performing most of the data entry.
Selection of Institutions
Five areas of the country were selected as sites for the SIS: Ann Arbor, Baltimore/Washington, Dallas/San Antonio, Raleigh/Durham, and Seattle/Tacoma. These sites were selected because they include institutions that receive some of the highest amounts of federal dollars for human subjects research and because we were trying to balance our sample with respect to geographic region, rural/urban settings, and expected ethnic mix. At each of these five sites, a university hospital, a VA hospital, and a community hospital were selected. If other federal government or military hospitals were present at a site, the most highly funded of these institutions were included. A total of nineteen institutions were selected, as presented in table 1. Interviews were conducted at sixteen of the nineteen institutions selected. At the University of Washington Health Services Center and the Seattle Veterans Affairs Medical Center, the institutional review board (IRB) process could not be completed within the time constraints of the SIS. Baylor University Medical Center declined to participate in the study.