BACKGROUND: In 2010, the Patient Centered Outcomes Research Institute (PCORI) was created to fund patientcentered research that meaningfully engages stakeholders impacted by that research. As a result, investigators became interested in understanding who are appropriate stakeholders and what meaningful engagement in research looks like (6, 8-10). OBJECTIVE: To understand how and when stakeholder engagement worked well and identify areas for enhancing engagement in a PCORI-funded research study of peer-topeer support of older adults in three communities across the USA. DESIGN: Qualitative interview study. PARTICIPANTS: Twelve members of the inter-disciplinary research team. APPROACH: Interviews were conducted via phone, recorded, and transcribed. Transcripts were analyzed using a constant comparative method to identify themes. Transcripts were independently coded; coded themes were discussed by a small group of the research team to check interpretation and clarify meaning. Once initial themes were identified, the interviews and codes were shared with an external consultant who recoded all 12 transcripts and conducted further analysis and interpretation. Documentation from research meetings was used to validate our findings. KEY RESULTS: Strategies for facilitating meaningful engagement in the partnership, proposal, study design, and planning phase were very similar to community-based participatory research and include the use of community to identify research needs, equitable compensation and leadership, and budgeting for engagement activities. Strategies in the data collection phase include the use of cultural brokers, weekly data calls between the academic PI and imbedded research assistants, and maintaining joint ownership for research. CONCLUSIONS: Major funding institutions (e.g., NIH, PCORI) recognize that community engagement leads to higher quality, more meaningful research (7, 21). Our results support that assumption and in addition, suggest an investment in engagement strategies at the onset of a research project and the use of cultural brokers can greatly contribute to the success of implementing a large, multi-site research project.
What is already known about this subject? Listening sessions and interviews with community and research groups provided unique insight into factors that contribute to cancer disparities, barriers to improving outcomes, and opportunities to improve health. What is added by this report? Analyzing data through The Model for Analysis of Population Health and Health Disparities contributed to our understanding of how different groups understand factors associated with disparities and where opportunities for meaningful collaboration exist. What are the implications for public health practice? The model allowed us to more fully understand the importance of seeking solutions to cancer disparities through a multisector approach rooted in the specific needs of communities.
Complex problems require a deep understanding of the issue and a collaborative approach to find sustainable solutions. Cancer disparities are complex and must be understood from a broad set of perspectives across the academic spectrum and non-academic sources (community members, community-based organizations, and policymakers). The Community and Cancer Science Network (CCSN) is a transdisciplinary network focused on addressing statewide cancer disparities. The CCSN grounds its approach in the principles of deep equity, systems-change, and the integration of biology to policy. It brings together diverse perspectives through a three-phase model: 1) Incubate ideas through co-learning among the team members to build shared vocabulary, knowledge, and integrate perspectives on the issue; 2) Innovate by using learnings to develop, prototype and pilot potential solutions; 3) Implement to further scale and embed solutions. Despite challenges, the commitment to this approach enabled our network to expand and strengthen transdisciplinary capacity in its partnerships. Now in its third year, CCSN encompasses four projects using its transdisciplinary approach: 1) a curriculum for biomedical researchers and community members to address mistrust and misunderstandings of disparities; 2) development of a shared measurement system to improve mammographic quality; 3) design and implementation of community-based action plans to address breast and lung cancer disparities, and 4) formation of a workgroup to explore the potential causes and solutions for prostate cancer disparities in the state. The projects are guided and supported through the framework by a leadership structure. To assess the impact of its approach on community-academic partnerships, CCSN assesses against a rubric developed in 2020 with its advisory team. The rubric measures partner perception of impact, values application, belonging, interconnectedness and shared purpose. CCSN looks at quantitative and qualitative data annually to generate insights on the strength of partnerships and how its leadership can build additional capacities. CCSN is currently finalizing its assessment of its third year of data. Initial findings suggest partnerships with sustained relationships and high levels of trust appear to weather challenges that accompany implementation of complex interventions. Results also indicate that partners are eager to consider implications for their own work and to connect with others doing similar work within CCSN as they experience similar challenges including navigating the pace of change. Incorporating varied perspectives into understanding cancer disparities and then developing and implementing solutions requires a thoughtful, deliberate and flexible approach. Our framework provides rigor without rigidity and allows academics and non-academics to build authentic and collaborative relationships which persist through adversity, facilitate a richer understanding of disparities and open doors for future partnerships. Citation Format: Tobi A. Cawthra, Laura Pinsoneault, Alexis Krause, Kristen Gardner-Volle, Kim Kinner, Jenelle Elza, Melinda Stolley. Implementing a transdisciplinary framework to build capacity for complex collaboration among academic and non-academic partners [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B078.
Introduction Cancer is a leading cause of death in Wisconsin, with higher mortality rates in African American (AA) and Hispanic (Hisp) populations. Focus groups with community members highlighted interest in programming to increase cancer awareness and support healthy behaviors. With this goal in mind and in partnership with the Milwaukee Recreation System (MKE Rec), Total Wellness (TW) was created to provide programming to Milwaukee communities. We present a program description and preliminary results for implementation of TW. Methods TW program content was informed by the American Cancer Society Guidelines and community feedback through surveys and discussion sessions. TW is a 16-week program implemented over two 8-week sessions (TW 1.0, 2.0) led by instructors trained in cancer prevention and lifestyle change. The program meets 2x weekly: Class 1 is a 30-min cancer and lifestyle education session targeting a weekly topic (wks 6, 10 include cooking demo), followed by a 60-min exercise class; Class 2 is a 60-min exercise class. TW is listed as a wellness class in the MKE Rec program guide. To promote enrollment, TW was advertised on MKE Rec’s website and social media, and program ads were distributed to zip codes of predominantly AA and Hisp neighborhoods. Once registered, participants were invited to complete an evaluation to assess program impact. Evaluation completion was not required to enroll in the class. TW is being evaluated at a systems level (i.e., # of registrants and # of instructors trained) and at an individual level (i.e., cancer awareness, health behaviors, fitness). Results At the systems level, 3 instructors were trained (2 are bilingual English/Spanish, 1 English only). The first TW 1.0 class began in January 2022 at a MKE Rec facility within a predominantly AA neighborhood and enrolled to capacity. In March 2022, a new TW 1.0 session at the same site enrolled to capacity, and 66% from the premiere TW 1.0 class re-enrolled for TW 2.0. Going forward, MKE Rec will offer TW 1.0 and 2.0 each season at the first site. In June 2022, MKE Rec began a TW 1.0 Spanish language class, the first of its kind, at a new site in a predominantly Hispanic neighborhood. At the individual level, 22 of 30 enrollees consented to participate in the evaluation. Participants are a mean age of 45.81 yrs; 72.7% are Black/African American, 22.7% White, 10.5% Hispanic/Latino, and 4.5% American Indian/Alaska Native (>100% ethnicity includes mixed-race participants). Most participants are employed full-time with varied education, marital status, and incomes. 57.1% of participants report HTN, 28.6% hyperlipidemia, and 54.5% obesity (mean BMI 35.25). 28.5% were current/former tobacco users, and 57.2% were insufficiently physically active. Given ongoing data collection, pre- and post-intervention changes have not yet been analyzed. Conclusion Though still in its early stages, TW has shown success in being integrated into MKE Rec and reaching AA and Hisp communities. Future reports will demonstrate program efficacy and sustainability. Citation Format: Devon C. Riegel, Jamila L. Kwarteng, Laura Pinsoneault, AnaKaren Manriquez Prado, Sandra Contreras, Sophia Aboagye, Erica Wasserman, Derek Donlevy, Alexis Visotcky, Patricia Sheean, Margaret Tovar, Kathleen Jensik, Regina Vidaver, Melinda R. Stolley. Partnering with an urban public recreation system to implement Total Wellness, a cancer prevention intervention [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B029.
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