Step 1: Engage – Build Partnerships and Engage the Community
In 1999, Kentucky’s colorectal cancer (CRC) incidence rate was 66.7 per 100,000 (Kentucky Cancer Registry, 2020a). That year, the state ranked 49th in the nation for CRC screening, with a rate of only 34.7% for colonoscopy and sigmoidoscopy (Centers for Disease Control and Prevention, 2015). At the same time, CRC was the second-leading cause of cancer death among men and women combined in the state, with a mortality rate of 22.6 per 100,000 (Kentucky Cancer Registry, 2020b).
The Kentucky Cancer Consortium (KCC) is Kentucky’s state comprehensive cancer control (CCC) coalition. KCC is comprised of 70+ diverse statewide organizations united to reduce the burden of cancer in the state. The KCC launched a focused, multi-pronged initiative to improve CRC screening rates in the state. The KCC prioritized its efforts by scanning the environment (Step 2: Scan) to identify a champion and to gauge the political will to proceed with this initiative. The KCC also conducted an assessment of existing data and evidence to support its position (Step 3: Assess). In addition, the consortium catalyzed dedicated leaders, engaged a diverse group of partners, and identified tangible and intangible resources required to launch and sustain the initiative.
The groundwork for this initiative was laid in the early 2000’s when the KCC was formed. By reviewing the data and through funding from the Centers for Disease Control and Prevention (CDC), the KCC began working on increasing colon cancer screening as part of an early detection workgroup. In 2006, the KCC conducted key informant interviews with its members to assess the efficiency of the consortium. The KCC also strategically considered the restrictions of funding and limitations of staff capacity. In response, the consortium was restructured: instead of workgroups corresponding to CCC action plan topics (i.e., prevention, early detection, etc.), the KCC moved to a structure of committees clearly focused on priority areas and on cross-cutting areas known as “standing and ad hoc” committees. The first ad hoc committee was the Colorectal Cancer Ad Hoc Committee. In working toward improved screening rates, committee members thought broadly in identifying partners. They reached out to a range of individuals and organizations. These included existing KCC members, such as the American Cancer Society (ACS), Kentucky Cancer Program (KCP)¹, Kentucky Department for Public Health (KDPH), and Kentucky Medical Association. Also included was a new Kentucky-based non-profit organization, the Colon Cancer Prevention Project, established in 2004 and led by a gastroenterologist who was enthusiastic about increasing CRC screening rates.
The Kentucky Cancer Registry presented data to KCC member organizations and to local communities through Kentucky Cancer Program District Cancer Councils (KCPDCC), showing that CRC was the second-leading cause of death in Kentucky, promoting the existence of evidence-based screening guidelines (United States Preventive Services Task Force) and interventions (Guide to Community Preventive Services), and focusing on the reduction of a health burden. In 2007, the KCC was selected by the Prevent Cancer Foundation to host a statewide Dialogue for Action® for Colorectal Cancer. This included a planning committee for the conference that included some partners already involved in the KCC and other types of organizations suggested by the Prevent Cancer Foundation. Once the Dialogue for Action® conference was completed in 2008 (resulting in three recommended priority areas), the Ad Hoc Colorectal Cancer Committee and the Kentucky Dialogue for Action® Planning Committee merged to become the KCC’s Colon Cancer Prevention Committee (CRC Committee).
The CRC Committee benefitted from passionate and committed leaders from state and multi-regional organizations who were part of the committee, participants in local/regional areas through the KCPDCC, and funding and technical support from the CDC.
Corresponding efforts related to the KCC’s work included:
The provision of mini grants in 2005 to increase CRC screening through the KCP, the KDPH and the KCC.
An initiative supporting legislation to establish the Kentucky Colon Cancer Screening Program (KCCSP), which passed in 2008.
A CRC roundtable for healthcare providers in 2010, sponsored by the KCP.
An effort that resulted in 2012 legislation to fund the KCCSP via a public-private partnership. To learn more about the KCCSP, please see the related PSE Change Example.
See a timeline of CRC-related activities and adoption of relevant national policies.
 The Kentucky Cancer Program is “state-funded, university-affiliated and community based” (Kentucky Cancer Program [KCP], n.d.). The program is administered jointly by the University of Louisville James Graham Brown Cancer Center and the University of Kentucky Lucille Parker Markey Cancer Center and operates through a network of regional offices (KCP, n.d.).
The continuing efforts of the CRC Committee and its partners have resulted in a significant improvement in CRC screening rates. In 2016, 70.1% of Kentucky adults received USPSTF recommended CRC screening, and the state ranked 18th in the country (CDC, 2015). In 2016, CRC incidence decreased by 24.3% and mortality dropped by 28.3% (Kentucky Cancer Registry, 2020a; Kentucky Cancer Registry, 2020b). This translates to approximately 340 Kentucky residents per year who will not get CRC (Kentucky Cancer Registry, 2020a).
Success Factors and Key Questions Addressed
Which stakeholders needed to be included in your efforts and how did you assemble them?
The CRC Committee includes representatives from the following types of organizations working on several different aspects of increasing CRC screening, including: infrastructure, public awareness, education and outreach, health care professional and health system changes, policy changes and research that collectively contributed to reducing CRC in Kentucky:
Academia (including the University of Louisville and the University of Kentucky cancer centers and the KCP)
Comprehensive cancer control (KCC)
Data (Kentucky Cancer Registry, Behavioral Risk Factor Surveillance System)
Nonprofit organizations and foundations
State, local and district government (health department, Medicaid, department of insurance)
Survivors and caregivers
Based on recommendations from the 2008 Kentucky Dialogue for Action® conference, partners’ interests and the evidence base, the CRC Committee also created three sub-groups: public awareness, provider education and policy. KCC staff provided support in helping these organizations participate in the sub-group that aligned with their best “fit.” Emphasis was placed on each member’s familiarity with their roles(s) and responsibility(ies).
How did the missions of diverse stakeholders align for the purpose of the PSE change effort?
Utilizing the Kentucky Cancer Action Plan as a guide, the diverse stakeholders agreed to work together toward increasing CRC screening. These goals and objectives aligned with stakeholders’ goals and objectives.
What resources (tangible and intangible) were needed that stakeholders could provide?
The CRC Committee’s greatest needs were in the areas of funding, lobbying and fundraising. The initiative received supplemental funding from CDC, and several organizations provided in-kind support (e.g., staff time, meeting room space, and money for food and printing). The Colon Cancer Prevention Project hired a contract lobbyist and the ACS Cancer Action Network provided leadership in lobbying efforts. The KCC revised the state’s Resource Plan to be more business friendly. It also engaged with a professional fundraiser – a 3-time cancer survivor interested in creating a non-profit organization (Kentucky Cancer Foundation) focused on fundraising to implement the Kentucky Cancer Action Plan. One of the first initiatives of the Kentucky Cancer Foundation was to support funding for the KCCSP (see the related PSE Change Example). In this way, a public-private partnership – using state and private funding – was established to support CRC screening for the uninsured.