Table 4 Recommendations for the research community on meaningful engagement
Theme | Quotes |
|---|---|
Keep all aspects of the approach patient- and community-centric | “We need a seat at the table. When this clinical trial is going on and you’ve got the researchers setting up protocols, setting up how it is going to work—advocacy, CBO…people that have sickle cell, need to be involved in every aspect of the trial.” (Patient) “I think for me the education component of it is really big. Everybody who has sickle cell knows somebody with sickle cell…. The more educated we are, the more powerful we become. And then we don’t have to worry about our community being underserved because they’ll be able to advocate for themselves….” (Parent) “One of the things I am working with in utero stem cell transplantation for SCD is going back to that community and saying, what is your understanding of IVF, PGD? Of stem cell transplants? And really trying to address, not just the barriers, but the opportunity—let’s do it the right way. Let us understand the population that we are trying to help a little bit better by figuring out how we can best prepare them.” (Physician) |
Dedicate resources to SCD because this disease has not received the attention it deserves | “I would say don’t mess it up…if you are really talking about it impacting the sickle cell population, you have to be very careful that the other rare diseases that have more resources don’t take it over and the sickle cell population gets left in the dust. Because they have been left in the dust with so many other things that they already are skeptics.” (Physician) “Dedicate the resources because we as a community deserve it. Sickle cell should be the first…. No excuses. We don’t have treatments.” (Parent) |
Be trustworthy, transparent, and provide easy access to clear information | “Make it accessible. Not so hidden that you have to go through hoops and back doors to find it because oftentimes that is a problem. We know the research is out there. We know the information is out there. But accessing that information is sometimes very, very difficult.” (Parent) “I would just want them to keep us in the loop, like, really. With the good and the bad.” (Patient) |
