It’s nearly impossible today to find someone whose life has not been impacted by cancer in some way – it might be someone they know fighting a cancer battle, or even their own life-changing diagnosis. While decades of research, innovation, and prevention efforts have resulted in life-saving improvements in diagnosis, care, and survivorship, thousands of families still lose a loved one to cancer each year.

Yet while mortality rates are declining nationally, cancer remains a leading cause of death and some groups of people experience a higher burden of cancer incidence and mortality.  In Wisconsin, the disproportionate impact of cancer is startling.

Wisconsin has the nation’s second largest Black–White disparity in lung cancer mortality, and the Milwaukee metropolitan area has the largest Black–White disparity in lung cancer mortality among metropolitan areas nationwide. Additionally, Wisconsin has the nation’s third largest Black–White disparity in female breast cancer mortality. Alongside differences by race and ethnicity, geographic mapping led by the MCW Division of Epidemiology has identified disparities in mortality of twice the expected rate in some areas of the state.

Today, through a multi-year, nearly $10 million AHW investment, a broad coalition of partners called the Community and Cancer Science Network (CCSN) is convening community organizations and academic medicine researchers to identify innovative solutions to address these disparities.

While the project’s aims are stated simply – to eliminate cancer disparities – addressing the complexities of the root causes contributing to these issues require a thoughtful, multi-faceted approach that take into consideration a variety of factors and needs.

The Community and Cancer Science Network grew out of an innovative developmental phase originated by AHW, which brought together a team of experts from community organizations and academic medicine to develop a deeper understanding of Wisconsin’s breast and lung cancer disparities and propose solutions.

“AHW provided the foundation for CCSN. It allowed a team to look at cancer disparities from many different perspectives and use that understanding to propose solutions, which include three initiatives coordinated by a central body known as the Integration Hub,” said Jenelle Elza, RN, strategic partnerships manager at the American Cancer Society and community co-PI for the CCSN Integration Hub.

“We’re seeing the impact within organizations and structures. Our peers from across the state are looking to us because they’re hungry to do something different.” - Kim Kinner
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In its initial year, the CCSN Integration Hub established a full advisory team, built developmental evaluation capacity, and identified community and academic leaders who would collaboratively shape proposals for impacting three key areas identified as needing focus: a pilot curriculum for community members and early-career biomedical researchers to address issues of mistrust and misunderstanding, understanding the role of mammographic quality in breast cancer disparities, and supporting multi-sector collaborative workgroups focused on furthering the work around critical issues of cancer disparities.

“The idea behind the integration hub is to build collaborative infrastructure across the state,” said Dr. Melinda Stolley, Anne E. Heil Professor of Cancer Research, Professor of Medicine, and associate director of cancer control and prevention at the Medical College of Wisconsin, who is the initiative’s academic Co-PI . “This initiative provides that environment; a structure and framework to do this work together and create sustainable solutions that can be applied to other focal areas in the future.”

In 2020 and 2021, the network launched its initiatives to address each of these areas. Supported by $4.8 million in AHW investment, the initiatives are bringing together the efforts of the world-renowned MCW Cancer Center with the expertise and experience of Wisconsin-based organizations including the Wisconsin Women’s Health Foundation, Center for Urban Population Health, House of Grace, Kingdom Ministries, the Wisconsin Women’s Health Foundation, the Wisconsin Cancer Collaborative and more.

A Research and Community Scholars Program has formed its inaugural class aimed at building a generational change in how medical mistrust and misunderstanding is approached.

A Mammographic Quality Project, whose team is growing to include partners from across the state, is examining whether mammography imaging, interpretation, and follow-up quality are influencing breast cancer disparities in Wisconsin while working to develop local and regional collaborative teams to sustain quality metrics.

The Collaborative Work Group initiative is working to build teams of diverse community and academic perspectives who will develop and implement integrated approaches addressing Wisconsin’s breast and lung cancer disparities. The teams will learn together, create collectively, and overcome issues of trust and power imbalances.

The Integration Hub recognizes that in addressing the complexities of cancer, tangible results may not be seen in health outcomes for years.

“Our wins are different than a traditional initiative,” said Kim Kinner, MA, senior director of cancer control partnerships at the American Cancer Society and community co-PI for the CCSN Integration Hub. “We’re seeing the impact within organizations and structures. Our peers from across the state are looking to us because they’re hungry to do something different.”

It's the foundation for innovation that has promise to impact the health of Wisconsinites for generations to come.

*Cross posted on Advancing a Healthier Wisconsin Endowment*

Using data in real time can strengthen any initiative. The Community and Cancer Science Network (CCSN) is an initiative of the Medical College of Wisconsin and the American Cancer Society. CCSN brings together partners from the community and academic medicine to address the different outcomes for different groups of people in the breast and lung cancer space. Evaluation Plus (E+) is the developmental evaluation partner of CCSN. E+’s role is to support a learning using different methods to answer design questions and use data in real-time to execute on strategy.

One of CCSN’s initiatives is the Research and Community Scholars Curriculum (“Scholars Program”). This Scholars Program brings together community leaders and biomedical researchers to learn about cancer disparities and cancer research from different perspectives, discuss the role of science and lived experience with bias and racism, and experiment with community-academic partnerships for problem-solving.

The Case for Real-time Data Tracking
The first cohort of the Scholars Program started in September 2021. To recruit scholars, program leadership used a combination of general outreach and targeted recruitment strategies. Outreach included making connections with community leaders and researchers to create awareness about the program and to explain CCSN and its value proposition. More targeted recruitment strategies followed up on referrals as well as direct asks to potential applicants.
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While we were hopeful we would meet our recruitment goals through these strategies, we still wanted to understand not just if the strategies were working, but how. To support the learning need, the team decided it needed a way to track the connections being developed, recruitment progress, and what challenges were surfacing. The solution: develop an easy-to-use and cost-effective tracking tool to capture the this data in real-time.

What is a tracking tool?
While we had made the case for real-time data tracking, we still need a way to gather the data. Tracking tools keep a record of what’s happening in a project. It can be as simple or as complex as required to meet the needs of the project. Some tracking tools are built into program management or other software packages. If you don’t have a software, you can easily build a tool using every day word processing or spreadsheet programs. The Scholars Program designed its tracking tool in Excel to document communication efforts and collect data to answer important evaluation learning questions, including:

• Are we on target to meet our recruitment goals? Why or why not?
• What questions do our networks have that could help us improve recruitment materials and strategies?
• Who is responsive to our outreach and who is not? And why?
• What kind of follow-up is needed in the recruitment phase?

How to Build the Tool
A quality tracking tool captures information consistently to make decisions about strategy. It can take time to identify and prioritize the most important data points to track. In the Scholars Program tracking tool, we wanted information like contact names, types of outreach efforts and outcomes of these efforts. To make it easy to use and consistent, we used drop-down options to get rid of inconsistencies in data entry. We knew our first version of the tool was not final, so, we met weekly during roll out to review the data being entered and make adjustments.

Getting the Most from the Tool
During recruitment, we used the tool to track the process and outcomes of different strategies. To make good decisions about strategy, its important to get good data and use it. One of our challenges was finding the time to get the data into the tool. To address this challenge, we appointed one person “information gatekeeper.” While the full team took responsibility for recruitment, the only person entering data was the information gatekeeper. The information gatekeeper regularly sent emails to team members with questions about their outreach. Additionally, team members copied the information gatekeeper on any recruitment emails.

To be sure we were using the tool and that the information was quality, E+ and the information gatekeeper met before each bi-weekly meeting to identify where more information was needed. We would then go into the program meetings with additional questions to address these information gaps and talk about what we were learning. These questions and discussions kept the project moving forward, but also allowed time to build out best practices for future recruitment.

Using a Tracking Tool in Your Own Work
Using this tool with the Scholars Program helped us manage processes and deadlines. It also helped us make near real-time adjustments to our plan. Further, it not only provided information about the success of our strategies, but helped manage multiple team members with different responsibilities for the project. By being intentional about the use of the tool, we also learned a lot about how to get the most out of our data. If you have a need for real time data, consider some of these ideas before building your tool.

Start with good data

• Define fields clearly. Don’t assume anything is common knowledge!
• Don’t leave cells blank. Instead, develop a way of noting missing data or data that is not applicable.
• Use drop down boxes rather than open text to maintain consistent data.
• Be clear and specific when asking for information from your contacts.
• Agree on a process for data entry. Once the process is decided, set up a training for people entering the data.

Be Flexible

• Focus only on most important information and how it will be used. Do not spend time and energy tracking data you won’t use.
• Know that it may take more than one communication to get the information you need.
• Offer multiple ways for people to provide data.
• Don’t be a perfectionist. It is okay to have missing data. The goal is to use the data you have right now. If you are using the data in real-time, it will get better.

Be intentional about data use

• Agree on the targets and assess your progress against those targets. The data collected mean little if you don’t know what you’re aiming for.
• Set a recurring time to review the data and engage your team in helping understand what it means. Each person should leave with clear action steps that will move the project forward.
• Realize that what you want to know may change overtime. Adjust your tool to serve your goals instead of your goals to serve your tool.

*Cross posted on Evaluation Plus*