Hayley Thompson, Ph. D., associate professor of oncology for the Wayne State University School of Medicine and the new leader of the Population Studies and Disparities Research Program at the Barbara Ann Karmanos Cancer Institute, sees her leadership position as one that works to expand the scope of research so that it may be translated to better care not only for African-American and Caucasian cancer patients, but for other diverse groups in metropolitan Detroit.
Putting momentum behind those efforts is recent funding awarded for Dr. Thompson's project, "Detroit HealthLink for Equity in Cancer Care." The two-year, community engagement funding award of $247,233 comes through a Patient-Centered Outcomes Research Institute, or PCORI, Eugene Washington PCORI Engagement Award.
Dr. Thompson's award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
"African-American and white patients tend to be well-represented in our research and this new project will allow us to continue those efforts, especially among African-Americans, who often experience the worst cancer outcomes," Dr. Thompson said. "I'm working to expand this to Arab Americans, Latinos and the LGBT (lesbian, gay, bisexual and transgender) community. The PCORI award is really key to that expansion."
WSU and Karmanos researchers will work with Voices of Detroit Inc., a regional organization that collaborates with various organizations to provide health care services to the uninsured and underinsured, to implement the project. The project ultimately strives to reduce rates of cancer incidence, late-stage diagnoses and cancer deaths in minority populations in Detroit and within Wayne County by identifying specific needs in those populations with cancer.
The project's specific aims include increasing the capacity among community stakeholders - cancer survivors, their caregivers, advocates and non-research organizations serving these individuals - to engage as partners of patient-centered outcomes research. Other aims include building trusting, collaborative and mutually beneficial relationships between community stakeholders and cancer researchers, and identifying cancer-specific patient-centered outcomes research priorities based on stakeholder input.
"Our focus is on research and identifying cancer needs in the community," Dr. Thompson said. "Our primary goal is to conduct cutting edge research for the benefit of constituents in our catchment area."
To fulfill these aims, three Cancer Action Councils are being created and will be situated in different parts of Wayne County, with members working to identify specific cancer needs in their respective communities. One council will be located at Karmanos, another at the Western Wayne Family Center in Inkster and a third at the VODI Outreach Center in Detroit. Each council will have a leader and 10 members selected based on their personal connections with cancer - either because they are a cancer patient, a caregiver of someone with cancer, or represent an organization that assists cancer patients.
"We are asking people how they see themselves being involved in the council and we're telling them, you'll be creating something that will have an impact," Dr. Thompson said. "We're hoping to cultivate a region-wide coalition with members who are ready and willing to partner with us to develop research ideas and models that best serve our community."
Individuals interested in joining a Cancer Action Council can submit their application to www.DetroitHealthLink.org by June 3.
The first phase, now underway, identifies leaders for the councils. Karmanos will work with VODI to implement the HealthLink model, which fosters a partnership with community entities in the formation of the councils. Council members will be trained on research methodologies. They will identify community concerns and needs related to cancer. Other phases include coordinating dialogue between the three councils and researchers based on the research needs identified by council members and producing a final report detailing community identified research priorities and potential pathways to realizing such research.
"Research questions can be modeled after the needs of the community," Dr. Thompson said. "What are the pressing cancer needs? What are the best ways to engage the community? We hope to get different perspectives from the council members."
Dr. Thompson said this sort of participatory engagement is unique within the research field. She hopes it will help council members and researchers identify the specific needs of the cancer community and lead to concrete steps that will help reduce the burden of cancer disproportionately experienced by minority populations in Detroit and Wayne County.
"We've been looking at different issues in cancer, cancer disparities and inequities for a long time," she said. "We've seen a lot of gains with the war on cancer, but disparities still exist. It raises the question, 'What is happening?'"
Tiffany Brent, executive director of VODI, sees the partnership between Karmanos and her organization with this project as an ideal vehicle to advance research for the benefit of the underserved populations VODI assists.
"It is important that VODI be a part of this project because it is an opportunity to help amplify the voice of the Detroit community in the research aspect of care in a way that has not been achieved," she said. "This collaboration is an opportunity for two organizations representing various needs along the spectrum of care to come together to produce a precedent for patient-centered outcomes in cancer care in our region."