Table 4.

Solutions to Meet LRRP Community Needs

Themes	Quotes
Community Engagement	“We work closely with the community board, both the patient side and, also, on the physician side. And so, we work with them -- all the way through even from the point where we were designing this study and drawing a grant, to figure out how to do that in a way that would be engaging to the participants we would like to recruit. We also work with a network of primary care physicians and hear their perspectives of how we would do this. And then, we come up with strategies based on the experience of researchers in our study who run several different programs. We come up with strategies for things like engaging people in the study, retaining people in the study, and communicating effectively to participants in the study” (Informant 27, Small, Disease-Focused Program)
	“Recently we wanted to learn more about what types of really specific recommendations for follow-up we could give to patients. And we had very helpful feedback from our ethics council and our clinical advisory council on really how to make those type of recommendations to patients that aligns with their practices and their, kind of, approach.” (Informant 18, Large, Disease-Agnostic Program)
Smartphone	“Well, a lot of them were doing it on their smartphones. That’s why, you know, it worked more in the beginning of the month when they had more minutes to be able to fill out the questionnaires. Most all of them had smartphones to be able to do that. They may not have had computers and computers at home, but at least on their smartphones they could.” (Informant 01, Small, Disease-Agnostic Program)
	“So interestingly enough, with smartphones we’ve seen, you know, access - especially in terms of our underserved community - is actually quite high. And so, we’ve designed everything so it can be done from your mobile phone. Doesn’t have to be a computer or other things. And so, I think that’s actually been another good equalizer in terms of participation.” (Informant 17, Medium, Disease-Focused Program)
Flexible Scheduling	“People work 9:00 a.m. to 5:00 p.m., and some of the medically underserved work nights, or they may work evenings. Traditional studies in academia are done, you know, from, like, 9:00 a.m. to 5:00 p.m., and we’ve adjusted hours and times and days to try to do some more at the beginning of the month.” (Informant 01, Small, Disease-Agnostic Program)
	“I would say the other thing we did is many of the families in low resource settings could not come during the day because they had to work. And so, we would make the consent process available to them on nights and weekends.” (Informant 02, Small, Disease-Agnostic Program)
Biological Sample Collection	“We do have the option to draw blood if people want it. Everyone selects the saliva kit because it’s easier. They don’t have to come back into the hospital for a blood draw.” (Informant 20, Small, Disease-Agnostic Program)
	“We looked into, like, how people could get their blood drawn remotely, but it’s harder than it sounds. And so, we kind of turned to saliva, which the lab wasn’t thrilled about, because saliva can be harder to work with, but, you know, I think we finally got to the point where it was like, ‘Okay, this will just make things so much easier.’ Because, really, all the communications can be done remotely, you know, all can be done through like, you know, telephone or video.” (Informant 16, Small, Disease-Focused Program)
Patient Support Groups	“I know once they get genetic information, our brochures have whatever information is available about patient organization groups with that same genetic condition.” (Informant 17, Medium, Disease-Focused Program)
	“We include support group information in the written materials that we send to everybody. And of course, for those patients who come to see us, that’s a routine part of our genetic counseling." (Informant 18, Large, Disease-Agnostic Program)
Insurance Enrollment Assistance	“The study doesn’t, but the hospitals do. I think that’s a big focus. If somebody shows up and they don’t have coverage, they’re going to get -- the social worker is going to help them apply through the health connector to get coverage. it’s not done through our study per se, it’s done through the hospital.” (Informant 19, Medium, Disease-Agnostic Program)
	“If we’ve identified a patient, let’s say, and they need, you know, more intense clinical management, screening, et cetera, and don’t have insurance, we would likely refer them to the health care system who deals with it, because those are their patients. it’s not that we won’t be doing it; it’s just the center here, in our capacity, that would probably be something that would be turned to the health care system.” (Informant 25, Medium, Disease-Agnostic Program)
Use of Charity or Philanthropic Funding to Support LRRP	“We’ll ask for authorization for genetic testing. It’ll be denied. Then we’ll have, you know, some back and forth with us saying it’s important and then the peer-to-peer discussions with insurance companies. And after that, you know, we basically give up and use our philanthropic funds.” (Informant 30, Small, Disease-Focused Program)
Referrals to Social Work Services	“We have a very active social work department for all of our patients. Because a lot of them have trouble with insurance. We’re helping get insurance for their clinical care. And genetic services are included in that.” (Informant 30, Small, Disease-Focused Program)
	“It would be embedded in the genetic counseling in some cases; and, if they needed further referral, it would be through the social services group at the institution.” (Informant 13, Small, Disease-Agnostic Program)