Steps IRBs can take to increase Hispanic participation
What can IRBs do to help reach out to the Hispanic population in their own communities?
• Make sure necessary outreach is funded. Amelie G. Ramirez, DrPH, a cancer researcher and deputy director of the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine in San Antonio, says IRBs need to ensure that an investigator has a budget appropriated for doing community education and outreach for their trials. In a cancer trial, for example, there should be plans to reach out to those Latinos with cancer in their own communities, through community clinics and local doctors.
"You need to make sure they aren’t just relying on their traditional data sources such as different types of registries," she says. "The numbers aren’t going to be there."
Funding should extend to covering necessary expenses for participants who may need help with transportation or baby-sitting costs, says Louise Hahn, BSN, MSA, research subject advocate for the University of Michigan’s General Clinical Research Center in Ann Arbor.
She says the Ypsilanti community advisory board frequently takes investigators to task, asking for more compensation for participants.
• Get community leaders involved. Particularly if an institution is in an area with a large Hispanic population, it’s important to seek out community leaders such as clergy or educators to serve on the IRB or on community advisory boards that work with the institution.
• Translators for documents and patients. Hahn says the standard procedure at UM is to have a document translated into Spanish by one translator, then translated back into English by a second translator, to make sure the original translation was correct.
In addition, there must be staff available who can communicate with the patients in Spanish, if necessary.
"If at all possible, there should be a cultural match, in terms of the person who’s doing the outreach and recruitment," Ramirez says. "And if not, definitely someone who’s culturally sensitive and bilingual would be the minimal requirement."
She and others note that in addition to providing a Spanish translation, documents should be written as simply as possible to address participants with less education.
• Make every step easier. Institutionalize practices that make it easier for all participants to understand and become comfortable with research.
Make sure researchers give adequate time to explaining trials and answering questions. Look at institutional barriers to participation — issues as small as parking and finding research facilities can hurt enrollment, particularly among people who don’t have much money or time.
"What we’re trying to teach our PIs to do is to look at these things as real barriers," says Nancy Lowenbergh, BSN, RN, a community research nurse for the Ypsilanti (MI) Health Center. "Not just: Oh yeah, it’s hard to park up there,’ But this will stop people from coming to you."
• Require follow-up with the community. Lowenbergh says when her health center completes its first protocol, "We’re going to have a party to thank everybody, and tell people what the preliminary results are.
"That’s another way we’re not going to drop the community," she says. "We will also be reporting back to the community advisory board because they OK’d the protocol in the first place. Those PIs need to come back and say, here’s what I found, thanks to your work and your permission."