Only 3% of cancer patients participate in cancer clinical trials (CCTs). A number of barriers to participation, particularly for minority groups, can be addressed through community-focused education and advocacy efforts. Working with community partnerships, a pilot program sought to change knowledge, attitudes, and role behaviors among community leaders, primary care providers (PCPs), and clinical researchers about CCTs, to increase patient awareness of and participation in CCTs. A mixed method evaluation utilized quantitative analysis of surveys administered to participants during the program period (2006-2008) and qualitative data from interviews with key participants. Programmatic efforts were effective in increasing knowledge and training community leaders and PCPs to disseminate messages about clinical trials, and ultimately increasing patient inquiries about local trials. Training improved cultural competency skills among clinical researchers to recruit and retain CCT participants. Partnerships fostered new processes and structures to facilitate CCT participation in their communities. Clinical trials education and advocacy efforts through community partnerships have an important role in enhancing clinical trial access and in increasing clinical trial participation. Oncologists' involvement in and leadership of such partnerships are critical to promoting CCT accrual, particularly for minority groups.
Background One barrier to wider PrEP availability is uncertainty about the most appropriate providers and practice settings for offering PrEP. Methods We conducted in-depth interviews with 30 clinicians—primary care and HIV specialists—in the NYC region to explore issues related to PrEP roll-out, including who should provide it and in what settings. Results A diverse group favored offering PrEP in non-HIV specialty settings in order to reach high-risk HIV-negative individuals. Yet for each clinical skill or ancillary service deemed important for providing PrEP—knowledge of the medications, ability to assess and counsel around sexual risk behavior, and ability to provide support for retention and medication adherence—participants were divided in whether they thought primary care providers/practices could achieve it. Five participants strongly favored providing PrEP in HIV care practices. Conclusion Although there may be multiple “homes” for PrEP, implementation research is needed to identify the most effective delivery approaches.
Due to advances in treatment, persons living with human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS) are living longer, but with aging, immune deficits, and lifestyle factors, they are at increased risk for cancer. This challenges community-based AIDS service organizations (ASOs) to address the growing cancer needs of persons living with HIV/AIDS (PLWHA). Community-based participatory research was applied to engage ASOs in exploring their capacities and needs for integrating cancer-focused programming into their services. Focus groups were conducted with a community advisory board (CAB) representing 10 community-based organizations serving PLWHA. Three 90-minute, serial focus groups were conducted with a mean number of seven participants. Topics explored CAB members’ organizational capacities and needs in cancer prevention, detection, treatment, and survivorship. Transcript analyses identified six themes: (a) agencies have limited experience with cancer-focused programs, which were not framed as cancer specific; (b) agencies need resources and collaborative partnerships to effectively incorporate cancer services; (c) staff and clients must be educated about the relevance of cancer to HIV/AIDS; (d) agencies want to know about linkages between HIV/AIDS and cancer; (e) cancer care providers should be culturally competent; and (f) agencies see opportunities to improve their services through research participation but are wary. Agency capacities were strong in relationships with clients and cultural competency, a holistic view of PLWHA health, expertise in prevention activities, and eagerness to be on the cutting edge of knowledge. Cancer education and prevention were of greatest interest and considered most feasible, suggesting that future projects develop accordingly. These findings suggest a high level of receptivity to expanding or initiating cancer-focused activities but with a clear need for education and awareness building. Qualitative findings will inform a large quantitative survey to validate identified themes, which will be applied in developing interventions to assist ASOs in adopting or expanding cancer-focused activities.
What do peasants in eighteenth-century England, African Americans in Reconstruction-era Virginia, mothers in Nicaragua and Argentina, and contemporary transnational activists have to do with one another? They all illustrate instances where marginalized groups challenge a lack of democracy or the limitations of existing democracy. Democracy is both a process and a product of struggles against power. Both the social capital literature and literature that focuses on democracy as a product of institutions can undervalue the actions of regular people who imagine a democratic world beyond anything that actually exists. The four cases examined in this article demonstrate that marginalized groups use a variety of performative and subversive methods to uproot the public sphere from its exclusionary history as they imagine, on their own terms, democratic possibilities that did not previously exist. In so doing, they plant the seeds of a more egalitarian public politics in new times and places. This process is "contentious pluralism," and we ask political scientists in all subfields to look to popular movements and changing political structures as they explore the promise of democracy and to rethink the gap between democracy as an ideal and the ways in which people actually experience it.
We conducted a street-based intercept survey with 480 men reporting sex with men (MSM) during June 2011 Gay Pride events in New York City (NYC). Awareness and knowledge of pre-exposure prophylaxis (PrEP) were limited. Many men believed that PrEP use should be encouraged, and that some of their friends would use it; and were interested in using it themselves. Men who believed that PrEP should only be taken before sex were more likely to endorse it and report greater likelihood of use.
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