Providers' Views on a Community-Wide Patient Navigation Program: Implications for Dissemination and Future Implementation.

The DuPage Patient Navigation Collaborative (DPNC) adapted and scaled the Patient Navigation Research Program's intervention model to navigate uninsured suburban DuPage County women with an abnormal breast or cervical cancer screening result. Recent findings reveal the effectiveness of the DPNC in addressing patient risk factors for delayed follow-up, but gaps remain as patient measures may not adequately capture navigator impact. Using semistructured interviews with 19 DPNC providers (representing the county health department, clinics, advocacy organizations, and academic partners), this study explores the critical roles of the DPNC in strengthening community partnerships and enhancing clinical services. Findings from these provider interviews revealed that a wide range of resources existed within DuPage but were often underused. Providers indicated that the DPNC was instrumental in fostering community partnerships and that navigators enhanced the referral processes, communications, and service delivery among clinical teams. Providers also recommended expanding navigation to mental health, women's health, and for a variety of chronic conditions. Considering that many in the United States have recently gained access to the health care system, clinical teams might benefit by incorporating navigators who serve a dual working purpose embedded in the community and clinics to enhance the service delivery for vulnerable populations.

The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations.

Despite increasing need to boost the recruitment of underrepresented populations into cancer trials and biobanking research, few tools exist for facilitating dialogue between researchers and potential research participants during the recruitment process. In this paper, we describe the initial processes of a user-centered design cycle to develop a standardized research communication tool prototype for enhancing research literacy among individuals from underrepresented populations considering enrollment in cancer research and biobanking studies. We present qualitative feedback and recommendations on the prototype's design and content from potential end users: five clinical trial recruiters and ten potential research participants recruited from an academic medical center. Participants were given the prototype (a set of laminated cards) and were asked to provide feedback about the tool's content, design elements, and word choices during semi-structured, in-person interviews. Results suggest that the prototype was well received by recruiters and patients alike. They favored the simplicity, lay language, and layout of the cards. They also noted areas for improvement, leading to card refinements that included the following: addressing additional topic areas, clarifying research processes, increasing the number of diverse images, and using alternative word choices. Our process for refining user interfaces and iterating content in early phases of design may inform future efforts to develop tools for use in clinical research or biobanking studies to increase research literacy.

Improving diversity in cancer research trials: the story of the Cancer Disparities Research Network.

The participation of racial and ethnic minorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70%) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian or Hispanic subgroup information. Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations. Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimen research.