Community-Driven Conversations: Partnership Building through CHEC-Ins.

BACKGROUND: Chicago's systemically underserved communities have disproportionately high cancer rates. The Chicago Cancer Health Equity Collaborative (ChicagoCHEC) brings together academic and community partners to address these health inequities. The community conversations known as "CHEC-Ins" provide a space for community members to voice their experiences and needs and for ChicagoCHEC to fulfill its commitment to advancing health equity through collaboration and action. OBJECTIVE: This paper presents a community-generated approach to social networking about cancer health issues known as CHEC-Ins. Through this innovative approach, community members and organizations share cancer related information and experiences, as well as needs and concerns, which are then channeled to ChicagoCHEC academic and administrative members who incorporate them into outreach and research activities. In this way, community members set the agenda and the process and collect the information they deem relevant and important. This paper describes the process of organizing and conducting two pilot CHEC-Ins and the model of this approach, which we intend to employ moving forward to advance partnership building and collaborative research practice between academic institutions and community partners and organizations. This paper contributes a unique model of community-generated and led outreach as a cornerstone of the ChicagoCHEC approach to community engagement. METHODS: The leaders of the ChicagoCHEC Community Steering Committee spearheaded the design and implementation of CHEC-Ins, including developing the question guide and hosting events within their organizations. LESSONS LEARNED: CHEC-Ins proved to be a valuable strategy for defining the role of community partners and establishing the basis for a bi-directional flow of information, resources, and productive action. The two pilot CHEC-Ins revealed important insights related to sources of cancer information, meanings and associated attitudes, barriers to access and use of health services, and social support systems in the communities where ChicagoCHEC works. We will implement this approach and continue to refine it as we conduct CHECIns moving forward.

Lessons learned in the practice of community-based participatory research with community partner collaboration in study design and implementation: the community scientist model.

Engagement of community participation is an innovative driver of modern research. However, to benefit the communities being studied, it is imperative to continuously evaluate ethical considerations, the relationship dynamic between researchers and community members, and the responsiveness of research teams to the needs and preferences of communities. Northwestern University's Center for Health Equity Transformation founded a community scientist program in 2018 that implemented a study using the Community-Based Participatory Research (CBPR) model. This project is an ongoing study of heavy metal exposure by geographic location in Chicago. Community scientists from various backgrounds, communities, and organizations formed an advisory panel, partnering with the cancer research team. This commentary describes lessons learned in structuring meaningful community involvement and benefit in CBPR, with a focus on three lessons learned that relate to ethics, relationships, and responsiveness. Our findings lay new groundwork for iteratively shaping best practices in CBPR.

Society of Behavioral Medicine (SBM) position statement: support increased knowledge and efforts to address the financial burden associated with cancer treatment.

Millions of individuals and their families struggle with both treatment-related and out-of-pocket (OOP) economic repercussions of a cancer diagnosis, an effect increasingly referred to as "financial toxicity." In 2014, the Agency for Healthcare Research and Quality (AHRQ) estimated the total U.S. expenditures for cancer at $87.8 billion dollars with patient OOP costs accounting for $3.9 billion dollars (2014). These figures do not take into account indirect costs, such as those from lost earnings. As a result, financial toxicity can extend well beyond the active treatment phase and have a substantial impact on a household's economic reserve and financial resilience well into the future. Of the 9.5 million U.S. adults aged 50 years and older diagnosed with cancer (2000-2012), 42.2% have depleted their assets at 2 years and 38.2% were financially insolvent in 4 years. Bankruptcy rates are 2.65 times higher among cancer survivors than matched controls. A full 70% of Americans want to have conversations about the costs of care with their health care providers, but only 28% report doing so. Delaying or deferring these conversations can have major financial consequences for patients. According to a polling conducted for the Robert Wood Johnson Foundation (RWJF) by Avalere Health, almost 20% of patients report forgoing care when they have questions about costs. A critical element to achieve this is to have accurate cost information, including health care insurance coverage policies. Specifically, while patients and their families look to their health care providers to help them better navigate the cost implication of their treatment choices, most who are willing to undertake this challenging task need to have accessible and comprehensive (including direct and indirect) cost information to facilitate the discussion.

Community-Academic Partnerships to Reduce Cancer Inequities: The ChicagoCHEC Community Engagement Core.

BACKGROUND: In 2015, Chicago Cancer Health Equity Collaborative (ChicagoCHEC) was formed to address cancer inequities. The Community Engagement Core (CEC) is one of the key components aimed at establishing meaningful partnerships between the academic institutions and the community. Herein, we describe ChicagoCHEC CEC processes, challenges, opportunities, successes, and preliminary evaluation results. METHODS: CEC stresses participatory and empowerment approaches in all aspects of ChicagoCHEC work. Evaluation processes were conducted to assess, report back, and respond to community needs and to evaluate the strength of the partnership. RESULTS: CEC has facilitated meaningful community integration and involvement in all ChicagoCHEC work. The partnership resulted in annual cancer symposium; more than 50 outreach and education activities, including cancer screening and referrals; the development of health resources; and providing expertise in culturally and health literacy appropriate research targeting minorities. Preliminary partnership evaluation results show that ChicagoCHEC researchers and community partners have developed trust and cohesiveness and value the community benefits resulting from the partnership. CONCLUSIONS: CEC is essential in achieving research objectives following community participatory action research (CPAR) approaches. Some key lessons learned include 1) the need for clear, honest, and open channels of communication not only among the three participating academic institutions, but also among the community partners, 2) transparent operational processes, and 3) mutual trust and understanding regarding the different cultures, structure, foci and processes, expectations at each institution and partnering organization.