Researchers Partner With People in the Real World
By David Robinson
UAMS’ Greer Sullivan, M.D., a veteran mental health services researcher and co-director of the UAMS Translational Research Institute, learned years ago that the success or failure of community-based research hinges on strong relationships with community partners.
For example, Sullivan said, “If doing a study about depression in rural African-American populations, you have to learn from the point of view of that community. We learned that you can’t use the word depression or you will not be able to engage people. Instead, you need to focus on wellness.”
Sullivan is among a growing number of UAMS researchers whose work involves community engagement, in which community members are included in planning the research right from the beginning of a project. This patient-centered outcomes research falls under the umbrella of translational research and is promoted at UAMS by the Translational Research Institute.
“Community engagement, patient-centered outcomes research, and translational research are redefining our scientific approaches,” said Lisa Jackson, J.D., R.N., executive director of the Translational Research Institute. “As a result, we’ve been given some exciting opportunities to include patients and communities as partners in health improvement across all demographics.”
The Future of Research
Patient-centered outcomes research (PCOR) represents a new and dramatic change in the way researchers are approaching the nation’s health and health care issues. It compares different medical treatments and interventions to help physicians and patients determine the best strategies for each patient’s unique circumstances.
Leading this change is the national Patient-Centered Outcomes Research Institute (PCORI), which was established by the 2010 Patient Protection and Affordable Care Act.
PCOR answers patient-centered questions such as:
- Given my personal characteristics, conditions and preferences, what should I expect will happen to me?
- What are my options and what are the potential benefits and harms of those options? PCOR takes into account an individual’s preferences and needs, and incorporates a variety of settings and diversity of participants to address individual differences and barriers to implementing interventions or communicating new health knowledge. Patients, communities and other stakeholders are at the table from the earliest stages to help guide research planning and implementation. This differs from the traditional top-down, one-size-fits-all approach to research and patient care.
Examples of patient-centered outcomes research include:
- Comparing interventions designed to reduce health disparities
- Comparing approaches aimed at improving health care systems and the efficiency of care
- Comparing medical treatments to determine what works best for specific patients under their unique circumstances
- Comparing approaches to communicate and disseminate information that will help improve patient outcomes
— David Robinson
UAMS officially joined other leaders in the new research movement in 2009 when it received a nearly $20 million National Institutes of Health (NIH) Clinical and Translational Science Award (CTSA). The NIH award supports the work of the UAMS Translational Research Institute, which is among 60 similarly funded institutions in the United States.
The institute is directed by Curtis Lowery, M.D., also chair of the Department of Obstetrics and Gynecology in the UAMS College of Medicine. Lowery, along with Sullivan, is also co-principal investigator for the CTSA. The institute supports research with the greatest potential to be “translated” into new knowledge and treatments that benefit health and health care, and it is working to speed the pace and efficiency of all research at UAMS.
The institute has also greatly expanded opportunities for another form of patient-centered outcomes research: comparative effectiveness research. By helping establish the Enterprise Data Warehouse, the institute has provided researchers the de-identified electronic medical records of nearly 1 million UAMS patients. The institute also purchased access to the LifeLink Health Plan Claims Database, which has medical and pharmaceutical data from more than 61 million patients across the United States.
Comparative effectiveness researchers at UAMS are excited because the data now allows them to compare drugs, medical devices, tests, surgeries and ways to deliver health care.
“The databases we have now can help us answer questions that you wouldn’t have dreamed about a few years ago,” said Mick Tilford, Ph.D., who co-directs the institute’s Comparative Effectiveness Research Component with Bradley Martin, Ph.D., Pharm.D.
Engaging patients and communities as valued partners is a priority for UAMS Chancellor Dan
Rahn, M.D., who would like to establish an Office of Community and Translational Research. Sullivan will lead the strategic planning for this office.
“Dr. Rahn would like to see what’s happening here on campus have more of an impact across the state,” Sullivan said. “We are partnering with people in the real world to find interventions that really work.”
Jackson also noted that by involving real people from the beginning of the research process, researchers are more likely to design studies that can succeed.
“Finding the participants needed for research is a major issue nationally, and many promising studies fail as a result,” Jackson said.
The Translational Research Institute is exploring novel ways to get more people to participate in research. It promotes ResearchMatch.com, an online registry that connects volunteers with researchers. So far, nearly 700 Arkansans have signed up. More than 150 people have signed up for the institute’s free mobile texting service, which provides text alerts about new research projects that are recruiting participants. In addition, the institute is establishing a registry of UAMS patients who wish to be contacted about research opportunities.
Through its Community Engagement Component, the institute is creating sustainable partnerships, such as with the Clinton School of Public Service and the Tri-County Rural Health Network. The institute also meets regularly with its Community Advisory Board, made up of people who represent their communities, not academia.
“We don’t think in the same way that people think in the real world,” Sullivan said. “We are not experts in a given community. We need the expertise of community members.”
Sullivan last year became the first UAMS researcher to receive a national Patient-Centered Outcomes Research Institute (PCORI) pilot award, which she is using to study the mental health needs of rural African-Americans. The $640,000 award was made possible by building on community partnerships in the Delta that were established over many years by researchers in the UAMS Fay W. Boozman College of Public Health, especially Kate Stewart, M.D., M.P.H.
Sullivan and her colleagues, Geoff Curran, Ph.D., and Ann Cheney, Ph.D., are partnering with the Tri-County Rural Health Network, which is working closely with UAMS researchers on other projects as well. She designed her study based on input from the leadership of the Tri-County Rural Health Network, Naomi Cottoms and Mary Olson, a doctor of ministry. Stewart, who leads the College of Public Health’s Office of Community-Based Public Health, has collaborated with the Delta organization on multiple projects and facilitated development of the partnership.
Positioned for Success
An inventory done by the Community Engagement Component of the Translational Research Institute found nearly 50 UAMS researchers with funded community engagement projects. The research emanates from across campus, but major contributors include the College of Public Health, Family Medicine, the Psychiatric Research Institute, and Arkansas Children’s Hospital Research Institute (ACHRI).
Sullivan, as co-director of the Community Engagement component, arranged meetings of the community engagement researchers to learn their needs. As a result, the institute established an equipment library for the researchers to assist in their work.
“If we work together across UAMS we should be well positioned to make a difference,” Sullivan said.