The Translational Research Institute (TRI), the Center for Health Literacy, and the IRB have collaborated to develop Plain-Language Consent Templates on a 5th to 6th grade reading level to improve participants’ comprehension of research procedures. 

Consent forms often have complex sentence structure and use vocabulary that make it difficult for the average adult to understand. Using a Plain-Language Consent can improve a participant’s ability to understand study procedures they are consenting for without compromising the content of the consent.

You can find these Plain-Language Consent Templates here.

This week KARK 4 aired an interview about UAMS/TRI’s ARresearch.org. Anna Huff (photo, left), discussed her participation in research and the benefits of her experience. Both Huff and Jean McSweeney, Ph.D., explained how joining the ARresearch.org registry of research volunteers benefits all Arkansans and noted the need for research participation from all Arkansas communities. By joining the registry, people may be contacted by UAMS about research that matches their health interest areas.

2016-05-10 – KARK 12PM – UAMS Research from UAMS Health on Vimeo.

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 Arkansans from all communities 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 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.

TRI Embraces ‘Lean’ Concepts to Improve Efficiency

At UAMS, translational research starts with TRI. Inherent in the term translational is TRI’s duty to provide researchers efficient access to an array of research services.

Two years ago, TRI introduced TRIservices@uams.edu, an email address for researchers to send requests for UAMS’ research services. This services portal system was streamlined in 2015 with the addition of a Request Services form, available on TRI’s website, TRI.uams.edu. The services portal was further streamlined just this month with a new form and increased automation.

Sparking the ideas for these new processes was TRI’s participation in trainings offered by the UAMS Performance Improvement Department. A condensed version of the Introduction to Lean training was provided to the TRI Leadership Council and program managers on Feb. 29. The program teaches methods for eliminating waste and promoting efficiency by identifying bottlenecks in processes, removing non-value added steps and adjusting processes to improve flow of services.

“The TRI services portal is a great example of how TRI is applying Lean on behalf of researchers,” said Beatrice Boateng, Ph.D., who leads TRI’s Evaluation and Continuous Quality Improvement program.

Prior to the services portal update this month, all requests went to Amy Jo Jenkins, a TRI project leader, who manually entered the requests into a database and routed it to the appropriate person to perform the service requested.

TRI utilized Lean principles to review the research services request processes and eliminated waste to improve the response time. “Now it is all automated,” Boateng said. “When a request comes in, it will automatically route to the person or service area.  It frees up Amy Jo to focus on other issues.”

The training was familiar but still helpful to Department of Biomedical Informatics Chair Fred Prior, Ph.D., who brings both industry and academic backgrounds to his role.  He envisions applying the principles of Lean to improve response times for research queries against UAMS’ research information repositories.

“I would like to make that happen as an example of how to apply it in research,” he said.

The Lean training also including aspects of change management. Laura Hutchins, M.D., who oversees TRI’s Clinical Trial Innovation Unit and serves as the liaison for the CTSA consortium’s clinical trial initiatives, referenced a key tenet of Lean – the value of teamwork and inclusiveness.

“Teamwork is important. Everyone’s input is valuable,” Hutchins said. “Small changes may result in large improvements in outcome.”

Boateng noted that Introduction to Lean trainings typically last a week, while the Leadership Council’s training was condensed and tailored for that group.

“I think the introduction we received was just enough to get us (TRI)  thinking about what to change to make us more efficient,” she said.

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.”

The March TRIbune newsletter features TRI’s embrace of Lean training to achieve more efficiency in the services it provides to researchers. The TRI Leadership Council participated in a day-long workshop on the key concepts of Lean. Also in this issue, read how TRI-support helped Kristie Hadden, Ph.D., land her first NIH grant for a health literacy/diabetes education study; TRI Director Laura James, M.D., writes about TRI’s plans for the year and recent progress; Pedro Delgado, M.D., is our TRI & Me feature; and see recent publication citations by TRI-supported  researchers.

It’s all in The TRIbune.

UAMS Profiles is offering hands-on training and  troubleshooting April 26 for those who want to enhance their profile page as well as those with technical issues to resolve. In addition, the training is open to any staff who may be assisting faculty with their profiles.

Feb. 16, 2016 | The UAMS Translational Research Institute’s (TRI) Shawna Owens, C.R.A., C.C.R.P.,

C.R.S., has received the 2015 Bonny Hope Wallace Award for her outstanding work with research participants.

Owens is TRI’s research coordinator unit manager and has been at UAMS for 20 years, starting in pediatrics, then the Winthrop P. Rockefeller Cancer Institute prior to joining TRI.

The Bonny Hope Wallace Award goes to a UAMS certified research specialist selected by their peers. Wallace worked in research at UAMS for more than 30 years before her death in 2004. The award in her name was presented at the conclusion of the Feb. 12 Certified Research Specialist (CRS) Awards Ceremony, sponsored by the UAMS Office of Research Compliance.

Owens’ nomination letter states that “Shawna is one of the most dedicated research coordinators at UAMS. She works tirelessly to provide the best possible experience for her participants and upholds the highest standards for research integrity in her interactions with both subjects and investigators. Her colleagues find her knowledgeable and helpful in all things related to human subjects research and rely on her wisdom and experience for guidance on a regular basis. Shawna is an expert in campus research policies and processes and is eager to help others navigate the system.”

Wallace was an instructor in surgery and laboratory director for surgical research at the Department of Surgery at UAMS as well as clinical coordinator of research at the Arkansas Children’s Hospital (ACH) Burn Unit. She was instrumental in pioneering ACH’s Burn Unit. Her efforts were focused on cutting-edge research to promote women’s health. She is remembered for her respectful treatment of research participants and her commitment to research integrity.

Owens said she was among those lucky enough to know “Miss Bonny” personally. “She was one of those amazing people that truly loved people and was completely dedicated to her work. It’s an honor to win an award named for her.”

When presenting the award to Owens, Sandy Annis, director of the Clinical Trials Office at the Cancer Institute, acknowledged the work of UAMS’ 104 certified research specialists. “Over this past year, research became personal for me as my mother was diagnosed with breast cancer and was treated on a research protocol,” she said. “I saw everything we all do in a completely different way. I want to thank all of you for what you are a part of and for the dedication and sacrifice that all of you make so that everyone will gain advancements in medical care and so that all our families and friends will get the care they deserve.”

Annis noted that constantly changing regulations and increasing complexity of clinical research challenge those in the field. Of Owens, she said, “She is highly respected among her peers and has continued to grow and show dedication to the reason we are all a part of this complex chaos.”