Table 2 Full preliminary rankings from Rounds 1 and 2
|  | Round 1 n = 21 (100%) | Round 2 n = 18 (87%) | ||
|---|---|---|---|---|
Mean (standard deviation) | Median (range; Q1, Q3) | Mean (standard deviation) | Median (range; Q1, Q3) | |
To feel respected as a research participant, how important would it be to you that the research staff… | ||||
 thoroughly describe the research study so you can decide whether to join? | 4.6 (0.5) | 5 (4–5; 4, 5) | 4.7 (0.5) | 5 (4–5 4.25, 5) |
 explain in a neutral way why you might or might not want to join the research study?a | 4 (0.9) | 4 (2–5; 3, 5) | 4 (0.9) | 4 (3–5; 3.25, 5) |
 give you plenty of time to make a decision about whether or not to join the research study? | 3.5 (1.3) | 4 (1–5; 3, 5) | 3.3 (1.3) | 3.5 (1–5; 2.25, 4) |
 give you options about which parts of the research study you want to be part of? | 3.9 (0.9) | 4 (2–5; 3, 5) | 3.8 (0.8) | 4 (3–5; 3, 4) |
 protect the privacy of your information? | 4.6 (0.7) | 5 (3–5; 4, 5) | 4.6 (0.7) | 5 (3–5; 4.25, 5) |
 show kindness, patience, non-judgment, and interest in you as a person?a | 4.7 (0.5) | 5 (4–5; 4, 5) | 4.7 (0.6) | 5 (4–5; 5, 5) |
 heck in with you to make sure you understand what you would be asked to do in the research study?a | 4.4 (0.7) | 5 (3–5; 4, 5) | 4.6 (0.5) | 5 (4–5; 4, 5) |
 show appreciation for your contributions to the research? | 3.9 (1) | 4 (2–5; 3, 5) | 3.7 (0.8) | 4 (3–5; 3, 4) |
 explain the benefits of the research study for you? | 4.2 (1) | 5 (2–5; 3, 5) | 4.4 (0.8) | 5 (3–5; 4, 5) |
 explain the benefits of the research study for society? | 4.5 (0.7) | 5 (3–5; 4, 5) | 4.4 (0.8) | 5 (3–5 4, 5) |
 have a specific person you can contact with questions?a | 4.6 (0.5) | 5 (4–5; 4, 5) | 4.7 (0.5) | 5 (4–5; 4, 5) |
 offer multiple ways of getting in touch with them, such as phone or email? | 4.3 (0.7) | 4 (3–5; 4, 5) | 4.2 (0.6) | 4 (3–5; 4, 5) |
 provide timely reminders and follow-ups?a | 4.2 (0.7) | 4 (3–5; 4, 5) | 4.2 (0.4) | 4 (4–5; 4, 4) |
 give you the results of your genetic testing?a | 4.7 (0.6) | 5 (3–5; 4, 5) | 4.8 (0.4) | 5 (4–5; 5, 5) |
 tell you about the overall research study findings?a | 4.5 (0.6) | 5 (3–5; 4, 5) | 4.6 (0.6) | 5 (4–5; 4, 5) |
 share the results of your genetic testing with your healthcare provider? | 3.7 (1.3) | 4 (1–5; 3, 5) | 3.9 (0.9) | 4 (2–5; 3.25, 4.75) |
To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you that the study… | ||||
 have research staff or interpreters who speak your language?a | 4.4 (0.9) | 5 (2–5; 4, 5) | 4.6 (0.8) | 5 (4–5; 4, 5) |
 write all research information in a way that is easy to read and understand? | 4.5 (0.7) | 5 (3–5; 4, 5) | 4.5 (0.7) | 5 (3–5; 4, 5) |
 allow you to take part in the research without needing to come into the clinic? | 3.7 (1.1) | 3 (1–5; 3, 5) | 3.5 (0.9) | 3 (2–5; 3, 4) |
 offer support and accommodations for people of all abilities? | 4.5 (0.6) | 5 (3–5; 4, 5) | 4.4 (0.7) | 4.5 (3–5; 4, 5) |
Survey 2 Exclusive Questions | ||||
 To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you that the study give you written materials on why the study is needed and important? | - | - | 4.1 (0.7) | 4 (3–5; 4, 5) |
 To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you to have the option to speak with study staff in person? | - | - | 3.7 (0.9) | 4 (2–5 3, 4) |
 To feel respected as a participant in the kind of cancer research described at the beginning of this survey, how important would it be to you that you get to decide if your study test results are shared with your healthcare provider? | - | - | 3.9 (1.1) | 4 (2–5; 3, 5) |