University Medical Center wants to give back to the community it calls home. Situated in the heart of the Washington Heights/Inwood (WAHI) neighborhood in northern Manhattan, the CUMC and its faculty were inspired by the fabled Framingham Study in Massachusetts to launch a cutting-edge initiative tailored to the health needs of the local WAHI community.
First envisioned in 2010 by Adam Wilcox, an associate professor at Columbia’s Department of Biomedical Informatics, the Washington Heights/Inwood Informatics Infrastructure for Comparative Effectiveness Research (WICER) Project has been developed and implemented by an interdisciplinary group of researchers from CUMC and the Visiting Nurse Service of New York. WICER’s primary goal was to understand the health of the community in order to improve it.
Wilcox and his team wanted to keep WICER agile and adaptable. Other longitudinal studies such as Framingham can go on for decades before providing results back to the participant and research communities. “We didn’t want to wait 20 years to publish our results. We wanted to leverage the data collected with the longitudinal health system data to get information out faster,” Wilcox says.
Bilingual community health workers, most from the area, conducted interviews using standardized survey tools with more than 6,000 WAHI residents. The content of the interviews was designed with input from the community to make sure that their priority concerns were included. Most interviews were conducted in Spanish to make it possible to include populations typically reluctant to participate in research. Building on the trust established through the initial interview process, community health workers also gathered saliva specimens for DNA and hormone analysis for a sub-sample of participants. This is particularly important since Latinos are typically underrepresented in biobanks.
So far, the WICER team has learned a lot about the community; more than 40 percent of those interviewed have hypertension, for instance, and there are high rates of obesity and low rates of physical activity. Many respondents reported health literacy issues such as difficulty learning about their medical conditions, low confidence in filling out medical forms, and need for assistance when reading written materials from their doctor or pharmacy.
Learning and responding
Having understood some of the health issues in WAHI from the perspective of community residents, the WICER team devised new ways to reach out to their neighbors. “It was important to give data back to survey participants, so they can take action to improve their health,” says Suzanne Bakken, Alumni Professor of Nursing and Professor of Biomedical Informatics and principal investigator of WICER and its follow-on study, WICER 4 U, both funded by the Agency for Healthcare Research and Quality.
To address this need, the researchers have created innovative, easy-to-understand infographics to visually display data and information about traits like blood pressure, depression, diet, and physical activity. Each infographic, which participants will be able to view on a secure website, is customized to an individual’s unique data set and includes a comparison with standard ranges for each trait so people can easily see where they are on the spectrum.
A major focus of WICER 4 U is also sharing survey data (all personally identifying information is removed) with researchers, local community-based organizations, and New York-Presbyterian Hospital (NYP)-CUMC so they can create “programs and interventions aimed at improving the health of the WAHI community,” says Bakken.
Putting It All Together
About 90 percent of WAHI residents who were interviewed agreed to have their interview data integrated with their clinical data from NYP-CUMC, resulting in a unique data resource that will let researchers study the health of the community and collaboratively design interventions to improve individual and population health.
In order to understand and integrate diverse data from NYP’s electronic health records, WICER interviews, biospecimens, and other sources, the WICER team had to build some new technology. They created a data warehouse and a data explorer that allows researchers to view results of specific elements, such as all participants of a certain age who have had diabetes and live in a particular zip code. The idea, says Wilcox, is to establish a foundation researchers can use for clinical studies. Currently, three projects that compare the effectiveness of different diagnostic approaches, treatments, and care management strategies for hypertension take advantage of the WICER infrastructure.
WICER co-investigators Chunhua Weng, Assistant Professor of Biomedical Informatics, and J. Thomas Bigger, Professor of Medicine and Pharmacology, have led WICER efforts related to improving clinical research workflow through development of innovative tools for eligibility screening and scheduling.
The WICER/WICER 4 U projects are already having an impact on the WAHI community in many ways. Data sharing with survey participants, community-based organizations, and NYP-CUMC facilitates health improvement activities at the individual, community, and healthcare organization levels. The WICER infrastructure, including its integrated data sources, provides researchers with a set of tools for designing research studies aimed at improving health and reducing health disparities of WAHI residents.
“Being a good neighbor means working closely with the WAHI community and other key stakeholders to address priority health concerns for maximum community impact, and that is what WICER and WICER 4 U aim to do,” says Bakken. The innovative WICER infrastructure and unique data resource provide the 21st century tools to do this.