Arkansans are now able to volunteer for research studies through a new website developed by the University of Arkansas for Medical Sciences (UAMS) Translational Research Institute.
Called ARresearch.org, the website announced today gives Arkansans a place to sign up if they want to be contacted about UAMS studies that are enrolling participants.
There are more than 1,200 active studies by UAMS researchers. The studies range from clinical trials to health surveys and tests of health interventions. UAMS research leaders hope that ARresearch.org can serve Arkansans as well as help meet the needs of researchers.
“Every day, Arkansans are stepping up to participate in research that will lead to better health for their communities, their families and themselves,” said Laura James, M.D., director of the Translational Research Institute. “Even so, medical research is in crisis across the U.S. It moves too slowly and is too costly and many studies do not meet their enrollment goals.”
For example, only 3-5 percent of adult cancer patients participate in federally funded clinical trials. James said the research community recognizes that it must approach medical research differently to solve the complex health challenges of today. Providing the public with greater access to research and making the enrollment process easier will help meet those challenges.
“A critical component of medical research in the future will be our sustained partnership with patients and communities,” she said. “ARresearch.org is one of many new approaches we will be taking. We involved the community in the planning of this research website and we are featuring patients and communities in our communications about research. Research done in Arkansas needs to reflect the needs, voices and experiences of Arkansans.”
ARresearch.org was established with input from four UAMS community and patient advisory boards. She hopes that over time the site will attract a large, diverse group of Arkansans who can help UAMS speed the pace of research and even improve the quality of its findings.
“Our goal was to create a website that makes it easy for anyone to become a research volunteer as well as offer a place to learn more about the kinds of research UAMS conducts,” said Jean McSweeney, Ph.D., who led the Translational Research Institute team that created the site. “We hope visitors will find the site to be inviting and written in a way that’s understandable to non-scientists.”
The site includes video testimonials from a cancer survivor who is taking a new, life-saving drug, and two pastors who have partnered with UAMS researchers to address health needs in their rural, predominately African-American communities. More videos will be added in the coming months.
“A major benefit for patients who come to academic medical centers is the opportunity to participate in research that leads to better health, such as clinical trials that offer new treatments,” McSweeney said. “We hope that ARresearch.org serves as a forum for the public to learn about opportunities to participate in all types of research that addresses diseases and conditions common in our state.”
The website’s registry will match volunteers to studies based on the areas of interest they check on the form, such as heart disease, mental health and cancer.
By filling out the registry form, also available in Spanish, potential volunteers only give UAMS permission to contact them about studies that match their interest areas and are enrolling participants; there is no obligation to participate in any study and they can withdraw from the registry at any time.
ARresearch.org includes links to ResearchMatch.com, a national registry of volunteers, as well as to the Arkansas Children’s Research Institute. There’s also a link to a mobile texting service sponsored by the Translational Research Institute that alerts people via text message about UAMS studies that are in need of volunteers.
The Translational Research Institute represents UAMS as part of a national consortium of Clinical and Translational Science Award (CTSA) research institutions supported by the National Institutes of Health (NIH) National Center for Advancing Translational Sciences (NCATS). Increasing public participation in research is a national priority.
UAMS is the state’s only comprehensive academic health center, with colleges of Medicine, Nursing, Pharmacy, Health Professions and Public Health; a graduate school; a hospital; a northwest Arkansas regional campus; a statewide network of regional centers; and seven institutes: the Winthrop P. Rockefeller Cancer Institute, the Jackson T. Stephens Spine & Neurosciences Institute, the Myeloma Institute, the Harvey & Bernice Jones Eye Institute, the Psychiatric Research Institute, the Donald W. Reynolds Institute on Aging and the Translational Research Institute. It is the only adult Level 1 trauma center in the state. UAMS has 3,021 students, 789 medical residents and two dental residents. It is the state’s largest public employer with more than 10,000 employees, including about 1,000 physicians and other professionals who provide care to patients at UAMS, Arkansas Children’s Hospital, the VA Medical Center and UAMS regional centers throughout the state. Visit www.uams.edu or www.uamshealth.com.
UAMS’ Kristie Hadden, Ph.D., learned this month that she is receiving a four-year, $2.9 million grant from the National Institutes of Health (NIH). Starting in April, she will use the funds to test a diabetes education and health literacy program in patient-centered medical homes at UAMS regional centers across Arkansas.
Hadden, director of the UAMS Center for Health Literacy and an early-career investigator, said her first NIH grant has roots in TRI support that dates to 2013. Early that year she pitched the idea of inviting a “dream team” of national level health literacy researchers to UAMS as part of a seminar series.
“I said we need to be doing health literacy research at UAMS because it is so relevant to translational research,” Hadden said. “As we develop and implement new interventions, if we fall short in communicating about this research and treatment options, we’re not going to benefit like we should, and communities won’t benefit.”
After receiving her formal proposal, TRI sponsored the seminar series featuring five prominent health literacy researchers from across the U.S. Throughout the series, Hadden developed strong, unofficial mentoring relationships with the speakers. When the Center for Health Literacy was established in 2014, two of the speakers, Michael Wolf of Northwestern University and Terry Davis of Louisiana State University Health Sciences Center in Shreveport, agreed to become formal advisers to Hadden for one year.
Wolf and Davis, now co-investigators on Hadden’s study, identified the UAMS Regional Programs’ Patient-Centered Medical Homes around the state as the ideal platform for testing a diabetes education/health literacy intervention. The two also suggested that she pursue the NIH grant.
“It all started from those visits in 2013 and 2014,” she said. “If the Translational Research Institute hadn’t made the lecture series possible, I really don’t believe I would have been able to establish those relationships this early in my research career.”
Harvard Medical School’s Mark Bauer, M.D., a national leader in research design and facilitating models of implementation, will be the visiting lecturer April 11, 12:30 – 1:30 p.m., COPH, 8/240. His presentation is “Applying Implementation Science Concepts in Real-World Studies.”