Table 4 Research design-related factors influencing research study participation

General research concern:

Inefficient, poorly designed, or unrepresentative research

“A research study might have cost a lot of money to try to learn something, and maybe they didn't learn as much as they really wanted to out of it.” – 30yo W,M

“[the results of many research studies] are not very representative…they’re usually done on predominantly white, middle-aged populations, and do not transfer across groups very well. So representation is really important.” –31yo API,F

General research concern:

Fraudulent research

“One [concern] that comes to mind right now is the whole thing about vaccines causing autism, and how that was clearly manipulated data…even though it was proven wrong later, people are still caught up on it.” – 31yo W,F

Study-specific concern:

Study-related risks

“if someone offered me to, say, "Hey, take this pill and see if it works for you. We don't know what it will do but we'll see if it works." That's something I would not entertain because it might have harmful effects on my body.” – 31yo Hispanic W,M

“I think anything that would be too invasive or would maybe give me pause… if you're talking any type of invasive procedure, is maybe something that is going to require overnight hospital stay, or like you said, a CT that might require contrast and needles and things like that, that may be a deterrent.” – 35yo B,F

Study-specific concern:

Convenience of study visits

“I just wouldn't really have tons of time during the weekday to physically go somewhere.” – 29yo W,F

Study-specific concern:

Efficiency of study visits

“Obviously, just the least amount of information that can be asked each time, making sure it's streamlined, no time is being wasted just sitting, making sure that once the participant shows up, their time is being used very wisely as much as possible…like when I go to a regular doctor, I sit there sometimes for a half-hour or an hour, just waiting to see the doctor for five minutes.” – 30yo W,M

“if we were to have appointments or scheduling for anything, I think it would be more comfortable if things are going on schedule and not to have huge wait times.” – 33yo W,F

Study-specific concern:

Compensation for travel

“I'm not asking to get paid a bunch of money or get rich off of something. I just want to feel like it's fair. Okay, I have to take off work. If I get paid to be off of work for my job, I'm not worried about it. [COMPANY] is still paying me. But if I have to drive to [CITY NAME], I'd expect my mileage to be paid for. I'm not trying to get rich or make money off the deal. I want to feel like it's not costing me something.” – 31yo W,M

Study-specific concern:

Compensation for time

“Financial compensation helps.” – 29yo W,F

“Being compensated for my time.” – 31yo W,M

“I feel like if I'm going to use my time to help others, I know that that sounds really weird, like I'm helping others but I want to get paid. That just sounds very selfish. But at the same time, during a pandemic I'm like, ‘Oh, I need money.’” – 27yo API/W,F