Organization leverages community resources for outreach, education
AAHRPP standard is simple, but directive
Accreditation standards regarding community outreach and education encompass just two short paragraphs and elements in the standards written by the Association for the Accreditation of Human Research Protection Programs (AAHRPP) of Washington, DC.
But this short section is intended to emphasize the importance of the role the public has in supporting research, as well as participating in research, says Marjorie A. Speers, PhD, president and chief executive officer of AAHRPP.
"The history of this standard dates back to 10 years ago when AAHRPP was created," Speers says. "In early 2000, an Institute of Medicine report on preserving public trust made a major point that protecting research subjects is a shared responsibility, and it's not just the responsibility of the IRB."
The IOM report made the case that in order for research subjects to be responsible and act responsibly in research, they would need to be educated about more than just the protocol and a particular subject, Speers explains.
"They need to know what research is and what their responsibilities and rights are as research subjects," she adds. "The idea is if we have a public that's well educated and well informed then that research public would be much better at participating in research."
With this report and its findings in mind, AAHRPP developed Standard I-4 to hold research institutions accountable for community outreach and education about the role of research.
All research institutions seeking accreditation must demonstrate their commitment to public outreach and education, but for most this activity might have a limited role in their overall work and standard operating procedures.
But at least one institution has found that community outreach and engagement is important to their overall mission.
"We formed relationships with various community partners," says Michael Briggs, chief administrative officer for the University of New Mexico Health Science Center (UNMHSC), Clinical and Translational Science Center (CTSC), of Albuquerque.
"One of the challenges in New Mexico is that we are such a broad, vast state with a very disparate population," Briggs explains. "We only have a population of about two million, but it's such a large state — the fifth largest in the union — and Albuquerque is right in the center, so we outreach to all four corners of the state."
Bridging the geographic differences required collaboration and partnerships.
"So once we formed our CTSC, we tried to help our community members obtain access to a centralized IRB office," he adds. "We opened our institutional review board at the health sciences center to our partners throughout the state and community."
The UNMHSC CTSC took these major actions with the goal of enhancing its community presence:
- Officials met with more than 40 organizations spread across the large but sparsely populated state and engaged with them to serve as their IRB. The participating IRBs include 16 of the state's 19 Pueblos;1
- The institution established enhanced IRB training, implementing modules that are integrated into Human Research Subject Training and using extended modules targeting community researchers;1
- They leveraged community resources and collaborated with Health Extension Rural Offices (HEROs) to have the local providers and health care practitioners educate their patient populations about research and particular research studies;1
- The institution formed a confederated IRB that includes New Mexico, Colorado, and Utah. The regional CTSA-driven IRB has led to streamlined approval processes for multisite trials.1
"We built collaborative relationships with the offices," Briggs says. "The HEROs are in the communities and provide a connection to UNMHSC, and we provide feedback to the community with those community partners."
UNMHSC has taken responsibility for public outreach activities and engaging the public, both of which are part of AAHRPP's goals for research institutions, Speers says.
"When we first started accrediting research institutions, these standards made institutions a little nervous, mostly because they weren't sure what they were supposed to be doing," she explains. "Over time, they'd put something on their website or refer to other websites; some would have brochures in multiple languages; they would have speaker bureaus so people could go out in the community and talk about research and what it means to be in a research study; there are a number of things they could do to meet that standard."
UNMHSC has focused on training HEROs and routinely networking with HERO organizations.
"We bring them in, and they meet with us and we also have networking and training opportunities for them," Briggs says.
"The meetings are one-day events where they can meet with our faculty," he adds. "We want them to help us identify what health disparities are in their communities and, hopefully, link them with a researcher or research project that they would be interested in implementing in their area."
For example, some research has noted increased asthma in southern New Mexico, and so HEROs in that region might decide to participate in a study that looks at that problem, he says.
"They would try to recruit participants for a particular study," Briggs says. "They'd ask their patients, 'Since you are an asthma sufferer, would you be interested in participating in this study?' Then we'd train the practitioners on the consent process and data collection."
Also there would be community specialists from the CTSA who would work with the partners to assist them with their clinical trial.
Other outreach strategies include brochures about both specific studies and research in general.
"We work to design the brochures with the HEROs," Briggs says. "And we are in the process now of having a community page put on our CTSC webpage to discuss some of the community resources and to show a map of the different studies available throughout the state."
Reference
- Newman S, Byram JK, Briggs M, et al. Creating a statewide and regional internal review board to facilitate community-UNM Health Sciences Center engagement. Abstract presented at AAHRPP Conference in Denver, CO: April 18, 2012.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content