We are honored to announce a new CTSI research resource: Validated Measures for Research with Vulnerable & Special Populations, a collection of survey instruments selected for applicability to groups the NIH has termed “special populations”, under-represented in translational research: pediatric populations, geriatric populations and other vulnerable populations (those with low income, lower educational attainment, racial/ethnic minorities, LGBTQ populations, etc.). The measures include a broad range of clinical and social variables, from homelessness to food insecurity, from discrimination to trust, from health literacy to language proficiency, from stress to mental health, from functional status to disability, and from caregiving burden to end-of life decision-making.
While other survey collections exist, to our knowledge this is the first to compile measures focused on common factors that can place vulnerable individuals at risk of disease, influence the efficacy of therapies, and change the course of illness. These factors represent potential intervention targets, either alone or with co-interventions, and some may even represent primary or secondary outcomes. The overarching objective of this new compendium of measures is to accelerate progress toward one of UCSF’s core values: achieving health equity.
View the Compendium of Measures
Making the tools available that are necessary to conduct high quality research in under-represented populations is critical to UCSF’s research enterprise and to our mission of advancing health worldwide and in our local communities. As such the UCSF School of Medicine Dean’s Office and Kirsten Bibbins-Domingo, the inaugural SOM Vice Dean for Population Health and Health Equity has partnered with the CTSI to assure the distribution, accessibility and maintenance of this important resource.
The measures are designed for primary data collection by researchers at UCSF and beyond. By making them available we aim to:
- Expand and improve the work carried out by investigators already involved in research with Special Populations.
- Encourage research trainees and junior investigators to participate in and/or lead translational research efforts with Special Populations.
- Enable the inclusion of important clinical and social variables for investigators who do not focus their work on Special Populations, or may even exclude them from their samples to avoid complexity.
- Enable community-based partners who provide direct service to Special Populations to develop and refine evaluation of their impact.
Whenever possible, we have included links to validated survey instruments, translated versions, validation source manuscripts, and the names of UCSF experts. In-depth assistance can be requested via CTSI Consultation Services. This compendium is predominantly not disease-specific, and is a work in progress. We welcome any comments on or additions to the measures themselves, suggestions for additional domains, and feedback regarding how you have used this resource, what worked well, and how it can be improved. Please send any such comments to: [email protected].
This new resource will be especially relevant to investigators interested in the activities of the CTSI Participant Recruitment Program, Community Engagement and Health Policy Program, and Training Programs (CTST).
We would like express gratitude to: Roberto Vargas MPH for his assistance and leadership in gathering and critically appraising the measures; Cynthia Piontkowski, from the CTSI Research Technology team for designing and presenting the compendium in a user-centered way; members of the former CTSI Special Populations Initiative for providing their insights, time and expertise; and numerous other UCSF Faculty and Project Coordinators for being so willing to share their wisdom in identifying appropriate, validated measures derived from their disciplines and experience. Finally, we would like to acknowledge the vision and commitment of Drs. Jennifer Grandis, Hal Collard and Deborah Grady from the CTSI Leadership Team for supporting the development and execution of this important new CTSI resource, one that we hope will advance our translational research efforts at UCSF and beyond.
Dean Schillinger, MD
UCSF Professor of Medicine in Residence
Chief, UCSF Division of General Internal Medicine
Director, Health Communications Research Program, UCSF Center for Vulnerable Populations at Zuckerberg San Francisco General Hospital
Kirsten Bibbins-Domingo, PhD, MD, MAS
Lee Goldman, MD Endowed Chair in Medicine
Professor and Chair, Department of Epidemiology and Biostatistics
Vice Dean for Population Health and Health Equity, UCSF School of Medicine
Director, UCSF Center for Vulnerable Populations at Zuckerberg San Francisco General Hospital
Director, Training Programs in the UCSF Clinical and Translational Science Institute