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The Community Scientist Program (CSP), a model connecting researchers with community members, is effective to inform and involve the general population in health-related clinical research. Given the existing cancer disparities among Black/African American and Hispanic/Latino/a populations, more models describing how cancer-related CSPs are designed, implemented, and evaluated are needed. The Florida-California Cancer Research, Education and Engagement (CaRE2) Health Equity Center is a tri-institutional, bicoastal center created to eliminate cancer health disparities among Black/African American and Hispanic/Latino/a populations living in California and in Florida. The CaRE2 Center created a Community Scientist Research Advocacy (CSRA) training program for community members to become cancer research advocates. The CSRA program is currently a 13-week program conducted 100% virtually with all materials provided in English and Spanish for participants to learn more about prostate, lung, and pancreas cancers, ongoing research at CaRE2, and ways to share cancer research throughout their communities. Participants attend didactic lectures on cancer research during weeks 1–5. In week 4, participants join CSRA self-selected groups based on cancer-related topics of interest. Each group presents their cancer-related advocacy project developed during weeks 5–12 at the final session. In this paper, we describe the CaRE2 Health Equity Center's CSRA program, share results, and discuss opportunities for improvement in future program evaluation as well as replication of this model in other communities. [ABSTRACT FROM AUTHOR]

Purpose: Despite the importance of engaging community members in research, multiple barriers exist. We conducted a mixed-methods evaluation to understand the opportunities and challenges of engaging community members in basic, clinical, translational, and population science research. Methods: We designed a survey and an interview guide based on the constructs of the Consolidated Framework for Implementation Research. Surveys were distributed electronically to all cancer center investigators and interviews were conducted virtually with a select group of basic, clinical, and population science investigators. Survey data (n = 77) were analyzed across all respondents using frequency counts and mean scores; bivariate analyses examined differences in responses by research program affiliation, gender, race, and faculty rank. Interviews (n = 16) were audio recorded, transcribed verbatim, and analyzed using a reflective thematic approach. Results: There was strong agreement among investigators that "Community engagement in research will help the SKCC address cancer disparities in the catchment area" (M 4.2, SD 0.9) and less agreement with items such as "I know how to find and connect with community members who I can engage in my research" (M 2.5, SD 1.3). Investigators mentioned challenges in communicating complex science to a lay audience but were open to training and workshops to acquire skills needed to integrate community members into their research. Conclusion: Cancer centers should develop and promote training and collaborative opportunities for investigators and community members. Overcoming challenges will lead to more patient- and community-centered cancer research in the future. [ABSTRACT FROM AUTHOR]

Objective: TeleDREAMS, a distance learning version of the Developing a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors (DREAMS) program, provides remote clinical research process and advocacy education to older adults with Parkinson's disease (PD) and their care partners. Method: Participants engaged in remote learning, reading eight weekly clinical research process and advocacy education modules. They also had weekly half hour phone discussions with staff about each module. Participants (PD: n = 28, care partner: n = 15) were tested on health literacy, quality of life, depression, research involvement, and advocacy measures. Results: People with PD improved on health literacy postintervention. PD participants who participated with care partners improved more on health literacy than those without care partners. PD participants' attrition rates were lower for PD participants in TeleDREAMS than those of the similar, in-person program DREAMS program studied before TeleDREAMS. Most participants reported research involvement and patient advocacy for older adults with PD 6 to 9 months postprogram. Conclusions: TeleDREAMS may improve health literacy in participants with Parkinson's and their care partners. If increased advocacy and health and research literacy translates to increased research involvement, then TeleDREAMS could be an important strategy for researchers interested in increasing participation. Public Significance Statement: TeleDREAMS, a low-tech, remote learning research education and advocacy training program may be effective at improving health literacy and encouraging research participation in people with Parkinson's and their caregivers. [ABSTRACT FROM AUTHOR]

This commentary discusses improving research advocacy as part of National Cancer Institute (NCI) clinical trial activities in scientific steering committees and task forces between 2016 and 2020. Before 2016, the focus of patient advocate input on clinical trial concept evaluation was assessing accrual feasibility. By leveraging informal benchmarking and an outside-in perspective, the NCI patient advocate steering committee, comprised of NCI scientific steering committee and task force advocates, has recalibrated research advocacy within and across its clinical trial concepts. Additionally, by focusing on research advocacy fundamentals, the NCI patient advocate steering committee clarified the scope of the research advocate roles, focused its mission, defined and developed competencies, measured engagement, and created collateral and processes that support better interactions and greater value generation. Continuous improvement in the collateral and the underlying approaches, along with calibrating their application and monitoring results, will be necessary to keep pace with the science and further enhance the value of cancer clinical trial research advocacy. The road ahead should build on these fundamentals and include increased emphasis on diversity, equity, and inclusion in clinical trial and research advocacy participants and the supporting infrastructure. [ABSTRACT FROM AUTHOR]

Opinion Statement: Research advocacy is an evolving concept and should be tailored for the colorectal cancer research community. Research advocacy training and evaluation must be designed for the patient community with their insight included at each step of engagement, training, and implementation. Patient advocates bring a great deal of expertise to the research review process, but it is important to ensure that their insight is appropriately placed, and they bring an appropriate orientation to the research process as the most informed patient. This can be accomplished in part by providing advocates with the proper training, employing universal core competencies, and applying principles of adult learning. Additionally, the research community, advocacy organizations, and industry partners must understand the need to diversify the voices that are being leveraged to guide research, recognizing the importance of adequate mental health tools and compensation commensurate with their experience. As a community, it is necessary that we create and implement training programs, as well as evaluate and measure their impact to continually improve and tailor the delivery of this specific education. Research advocacy has become a necessity to the field, and when implemented effectively, research advocates can have a significant impact on the delivery of health care research, improving health outcomes for all those affected by colorectal cancer. [ABSTRACT FROM AUTHOR]

The Office of Living Victoria (OLV), was established in 2011 by the then Liberal-National Party Coalition Government. It was created in response to a water crisis and intended to revolutionise water management and delivery, challenging established authorities and practices consolidated under the previous Labor government in Victoria. There was a decidedly partisan motivation for its conception. The drive for new ideas and innovation created opportunities for policy entrepreneurs who won the competition against more conventional research advocacy, and determined the agenda of the new agency, in the process curbing an existing policy network. Yet within a short period, this initiative was mired in scandal, and ended in 2014 having failed to achieve its purposes. This article explores this instance of policy failure, assessing the policy trajectory of the OLV in relation to the concepts of partisanship, policy entrepreneurship, and policy networks. [ABSTRACT FROM AUTHOR]

Objective. Migrants constitute 26% of the total Australian population and, although disproportionately affected by chronic diseases, they are under-represented in health research. The aim of the present study was to describe trends in Australian Research Council (ARC)- and National Health and Medical Research Council (NHMRC)-funded initiatives from 2002 to 2011 with a key focus on migration-related research funding. Methods. Data on all NHMRC- and ARC-funded initiatives between 2002 and 2011 were collected from the research funding statistics and national competitive grants program data systems, respectively. The research funding expenditures within these two schemes were categorised into two major groups: (1) people focused (migrant-related and mainstreamrelated); and (2) basic science focused. Descriptive statistics were used to summarise the data and report the trends inNHMRC and ARC funding over the 10-year period. Results. Over 10 years, the ARC funded 15 354 initiatives worth A$5.5 billion, with 897 (5.8%) people-focused projects funded, worth A$254.4 million. Migrant-related research constituted 7.8% of all people-focused research. The NHMRC funded 12 399 initiatives worth A$5.6 billion, with 447 (3.6%) people-focused projects funded, worth A$207.2 million. Migrant-related research accounted for 6.2% of all people-focused initiatives. Conclusions. Although migrant groups are disproportionately affected by social and health inequalities, the findings of the present study show that migrant-related research is inadequately funded compared with mainstream-related research. Unless equitable research funding is achieved, it will be impossible to build a strong evidence base for planning effective measures to reduce these inequalities among migrants. [ABSTRACT FROM AUTHOR]

Simple Summary: This commentary reflects a collaborative effort between international Invasive Lobular Carcinoma (ILC)-focused breast cancer researchers, clinicians and patient advocate leaders. It offers a perspective on the progress made in ILC research in recent years and discusses the recent rise in patient advocate involvement to advance ILC research, raise awareness and educate about this disease. It outlines several distinct challenges in conducting ILC research and describes opportunities and suggestions for ways researchers, clinicians and advocates can work together to advance ILC research to develop new therapies and refine the care offered to patients. Breast cancer research and therapies have significantly advanced in recent years. However, Invasive Lobular Carcinoma (ILC), the second most common histological type of breast cancer and the sixth most frequently diagnosed cancer of women, has not always benefited from critical analysis, missing opportunities to better understand this important subtype. Recent progress understanding the biological and behavioral differences of ILC demonstrates that it is a unique subtype of breast cancer which can respond differently to common therapies. These new insights have increased interest in researching lobular breast disease. Concurrently, the formation of motivated patient-led advocacy organizations working in partnership with basic, translational and clinical researchers creates new opportunities, including connecting a dispersed patient population to research, encouraging new research funding and connecting patient advocates to researchers to advance common goals. This commentary will explore the unprecedented opportunity to drive multidisciplinary, multicenter and international collaborative research into lobular breast cancer that builds on recent research progress. Collaborative research partnerships that include advocates can result in a better understanding of ILC, identify targeted therapies and refine standard of care therapies that are currently equally applied to all breast cancers, resulting in improvements in the diagnosis, treatment and follow-up care for patients with ILC. [ABSTRACT FROM AUTHOR]