Objectives Women, the elderly, racial/ethnic, and rural populations are underrepresented in research, which leads to findings that are not representative of diverse populations. A “Sentinel Network” of five sites has been implemented to understand health concerns of underrepresented groups, based on the Community Health Worker (CHW) model. Methods Investigators at the five sites (Washington University, U.C. Davis, U. Michigan, U. Rochester, Einstein College of Medicine) and two community-focused national organizations (Community-Campus Partnerships for Health and Patient Advocates in Research), developed a common assessment used by CHWs to elicit information about research perceptions, top health and neighborhood concerns, and health conditions. Results CHWs surveyed 5,979 individuals. Across all sites, while the top five health concerns were hypertension, diabetes, cancer, weight, and heart problems, high blood pressure was the most common self-reported condition. Interest in research participation ranged from 70.1% among those of “other” races to 91.0% among African-Americans. Overall, African Americans were more likely than persons of other race/ethnic groups to be interested in participating in studies that required giving blood samples (82.6%), genetic samples (76.9%), medical records (77.2%), staying overnight in a hospital (70.5%) and using medical equipment (75.4%). Conclusions This study found that 87% of Sentinel Network participants are interested in participating in health research. Top health concerns were consistent across geography. African-Americans reported higher willingness to participate in research even if it requires blood samples or genetic testing.

Background Use of common data elements (CDEs), conceptually defined as variables that are operationalized and measured in identical ways across studies, enables comparison of data across studies in ways that would otherwise be impossible. Although healthcare researchers are increasingly using CDEs, there has been little systematic use of CDEs for symptom science. CDEs are especially important in symptom science because people experience common symptoms across a broad range of health and developmental states, and symptom management interventions may have common outcomes across populations. Purposes The purposes of this article are to (a) recommend best practices for the use of CDEs for symptom science within and across centers; (b) evaluate the benefits and challenges associated with the use of CDEs for symptom science; (c) propose CDEs to be used in symptom science to serve as the basis for this emerging science; and (d) suggest implications and recommendations for future research and dissemination of CDEs for symptom science. Design The National Institute of Nursing Research (NINR)-supported P20 and P30 Center directors applied published best practices, expert advice, and the literature to identify CDEs to be used across the centers to measure pain, sleep, fatigue, and affective and cognitive symptoms. Findings We generated a minimum set of CDEs to measure symptoms. Conclusions The CDEs identified through this process will be used across the NINR Centers and will facilitate comparison of symptoms across studies. We expect that additional symptom CDEs will be added and the list will be refined in future work. Clinical Relevance Journal of Nursing Scholarship, 47:5, ©2015 Sigma Theta Tau International.