A new Library collaboration with the Georgetown University Medical Center will facilitate access to data and findings from a study about psychosocial resiliencies–"healthy aging"–among men living with and without HIV.
The Multicenter AIDS Cohort Study (MACS) is a longitudinal observational cohort which has studied the treatment and prevention of HIV disease among 7,357 sexual minority men from Baltimore-Washington, DC, Chicago, Pittsburgh and Los Angeles since 1984. Dr. Michael Plankey, a clinical infectious disease Professor in the Department of Medicine, Division of General Internal Medicine at Georgetown University Medical Center, is a MACS co-investigator. The healthy aging sub-study of the MACS, for which Plankey is a co-principal investigator, was funded by the National Institute of Minority Health and Health Disparities in 2016.
Dr. Plankey collaborated with staff in the Library Information Technology department to develop the MACS Healthy Aging Database, a site that provides access to an electronic codebook and data request tool for researchers as well as a dissemination portal of study findings for participants. “I’m an epidemiologist, and I have an idea of how data can be stored and held, but I don’t have a lot of knowledge about information dissemination and display,” Plankey said. “The Library had the skill to make that happen for me.”
The intent of the sub-study “was to identify, through a series of surveys administered over 3 years, what psychosocial resiliencies men living with and without HIV have, and how impactful they are in maintaining overall and HIV health,” Plankey explained. Researchers have historically looked at the vulnerabilities of sexual minority men, such as internalized homophobia that can promote poor health outcomes, to develop interventions to reduce the risk of HIV transmission. In this sub-study, “What we wanted to do was turn the tide and look at the strengths these men have to positively inform strategies that would help other men to build those strengths.”
“We ultimately decided to implement the site with Drupal, since we could spin up a site and structure the data to make it easily searchable,” said Steve Fernie, the Library’s Web Services Coordinator. The goal in building the site is to make the data more accessible to researchers, facilitating more research using the information, and to make the research findings more accessible and understandable to study participants.
The site makes it easy for researchers to know what data is available from the sub-study and to request variables directly from the research team. The website interface allows researchers to search for variables they might be interested in, save them as a list, and then request the data for free through a cart system similar to those used in online shopping sites.
The website also serves as an information portal for study participants, who are too often overlooked in the information dissemination plans of research studies. “Dissemination is often just putting up papers,” Plankey said. “What we wanted to do is make the information easier to read and understand.” The participant portal includes several infographics created by the research team, and investigators also plan to create brief videos and other media to explain the study findings.
“This project is a great example of the utility of digital scholarship projects,” observed Megan Martinsen, the Library’s Digital Scholarship Librarian.