ARISE ACTION COUNCIL
Partnering with the local African American community is critical to reducing the cancer burden in Southeast Michigan.
The community which we serve plays a critical role in all our research efforts. Drawing on the HealthLink model, we convened a Cancer Action Council of community stakeholders whose lives have been affected by cancer specifically for the ARISE study. Their lived experiences, thoughts, and concerns are brought to the table at CAC meetings, and in collaboration with the ARISE investigative team, contribute to the research questions, study design, and implementation.
HEALTHLINK MODEL
Michigan Cancer HealthLink is a statewide network created to build research capacity in
diverse communities. The HealthLink model brings community members together to be
involved in every step of the research process from developing theoretical models to study
design to implementation and to dissemination. The formation of Cancer Action Councils
facilitate this collaboration and ensure that community voices are heard, included and
amplified. HealthLink models help keep the research informed and grounded in the actual
lived experiences of the community to better achieve health equity.
The ARISE Action Council was convened specifically for the purpose of the project. You can
find out more about all the CACs here:
https://karmanoscancerhealthequity.org/cancer-action-councils/
The HealthLink model is an integral piece of the ARISE project wherein community members bring their thoughts and expertise to clinical research. Contributors are able to be involved in every step of the research process. Various members of the community – from cancer survivors, caregivers to advocates – collaborate with the ARISE team in an iterative process. The formation of Cancer Action Councils facilitate this collaboration and ensure that community voices are heard, included and amplified. HealthLink models help keep the research informed and grounded in the actual lived experiences of the community to better achieve health equity.
The ARISE study is innovative using community stakeholders in aspects of research that is typically limited to academics and traditionally excludes community members.
ARISE ACTION COUNCIL MEMBER TESTIMONIES
“…knowledge is power. And the more information we have the more effective we can be communicating this within our community and being aware of it (define [it]) ourselves, as to our own experiences…”
“They prescribe certain medicines, and not truly totally explaining the effects of that. And then when you ask questions, some doctors, it’s been more than once, act irritated because you’re asking them questions.”
“Stress influences cancer… we as African American women are under stress a lot most of the time and as a result, we’re always on that edge … when we get up in the morning. Okay, what am I going to encounter today is in the back of our mind.”
“White collar workers can often continue working while sick and have income and insurance to fight cancer. While blue collar people may not have that same sort of access to care and insurance.”
Concept mapping in combination with the Delphi method was used to elicit community members ideas and to refine the theoretical model for the study
During mapping sessions, CAC members reflected on the concepts of neighborhood adversity, community level racial bias, and racial residential segregation