Priority Populations Toolkit
Purpose & Intended Audience
The Priority Populations Toolkit is primarily a resource for researchers who would like to work with populations facing health disparities and underrepresentation in research. Some examples of the audience include researchers who have experience with other populations and would like to expand to these groups, as well as people who may be relatively new to research (students, research assistants, new faculty, etc.). By using this toolkit, we hope to encourage researchers to work with these populations, increasing these populations’ participation in research. We also hope researchers will use this information as a springboard to do further reading and investigation into best practices.
Research is intentionally defined broadly. The principles in this toolkit can be helpful to people doing clinical trials for cancer, public health needs assessments, social work research, etc. We hope that investigators across many disciplines will use this toolkit.
Background & Rationale
The NIH Clinical and Translational Science Award program has emphasized integrating special populations into translational research. This includes engaging patients and communities in every phase of the translational process, and promoting the integration of special and underserved populations in translational research across the lifespan. The goal is that all population groups benefit equally in advances in health care. Three strategies will help reach these goals: working to increase the number of investigators working with special populations, offering consultations and mentoring, and engaging in thoughtful recruitment and retention activities.
The groups featured in the target populations toolkit face a double layer of obstacles to achieving health equity. They face significant disparities in outcomes. For example, Lesbian, gay, and bisexual (LGB) populations are at increased risk for anxiety and depression, and LGB youth are 2-3 times more likely to attempt suicide. Additionally, healthy life expectancy at age 25 is lower for Hispanics and non-Hispanic Black adults than it is for non-Hispanic Whites. Consequently, Healthy people 2020 identified these and other groups as health disparity populations.
Reducing these disparities will take efforts on many fronts, one of which will be gathering good data on effective interventions and programs. However, major gaps exist in target populations’ participation. A systematic review showed researchers do not pay much attention to recruiting LGBT participants or developing targeted interventions for this population. Similarly, clinical trial participation rates for African-American and Hispanic cancer patients are much lower than for white patients. Much work needs to be done to improve recruitment and retention effectiveness when working with these target populations.
The Community Engagement & Collaboration team has developed this idea into the current toolkit, with support from other researchers and programs at UIC.
How to Use the Toolkit
Upon completion, there will be nine population toolkits, with each toolkit divided into twelve sections. To download the full toolkit, users are requested to fill out a brief form. Providing your information and checking the appropriate box will help us contact you in the future to see how you are using the toolkit. However, we will not share your information outside CCTS, and we will only contact you about the toolkit.
The toolkit is intended as an introduction to working with each population. Through using it, researchers can become familiar with key ideas and issues. While it can get you started, no toolkit can answer all questions or make you an expert in working with the population. Resources are cited for further reading, and having conversations with members of the population is a key way to build knowledge and relationships. The Community Engagement and Collaboration Core can give further guidance on recruitment, retention, and engagement.
There will also be a section on intersectionality. Although each target population has its own toolkit, people have multiple sources of identity that can impact them and the ways they interact with the world in different ways. Everyone using this toolkit is encouraged to read the intersectionality discussion.
Citing the Toolkit
The UIC Center for Clinical and Translational Science at the University of Illinois at Chicago produced these toolkits. The National Institutes of Health requires that investigators cite the CTSA grant if they use any CCTS services to support their research. The CCTS relies on these citations as a critical performance measure when reporting annual productivity to NIH.
If you use the Priority Population Toolkit to support your research, the following text is recommended:
"The project described was supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002003. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health."
Recommended APA Citation
Priority Population Toolkit. (2018). Center for Clinical and Translational Science, University of Illinois at Chicago. Retrieved from http://www.ccts.uic.edu/content/priority-populations-toolkit.
Questions, Comments, Feedback?
In need of further support? Our Community Engagement & Collaboration Core may be able to support your project with a consultation. Use the request service button on that page to submit a request.
- King, M., Semlyen, J., See Tai, S., Killaspy, H., Osborn, D., Popelyuk, D., & Nazareth, I. (2008 August 18). A systematic review of mental disorder, suicide, and deliberate self harm in lesbian, gay and bisexual people. BMC Psychiatry, 8(1), 70-85. DOI: 10.1186/1471-244X-8-70.
- Cheng, M.H., Molla, M.T., Truman, B.I., Athar, H., Moonesinghe, R., & Yoong, P.W. (2014 August 30). Differences in healthy life expectancy for the US population by sex, race/ethnicity and geographic region: 2008. Journal of Public Health, 37(3), 470-479. DOI: 10.1093/pubmed/fdu059.
- Lee, J. G., Matthews, A. K., McCullen, C. A., & Melvin, C. L. (2014). Promotion of tobacco use cessation for lesbian, gay, bisexual, and transgender people: a systematic review. American Journal of Preventive Medicine, 47(6), 823-831.
- Murthy, V.H., Krumholz, H.M., & Gross, C.P. (2004 June 9). Participation in Cancer Clinical Trials: Race-, Sex-, and Age-Based Disparities. Journal of the American Medical Association, 291(22), 2720–2726. DOI: 10.1001/jama.291.22.2720.