Linking Registry Data to Early Detection Programs
Arizona Cancer Registry
In Arizona, CDC's National Breast and Cervical Cancer Early Detection Program (NBCCEDP) funds are administered by the Arizona Department of Health Services Well Women HealthCheck Program (WWHCP), the Navajo Nation Breast and Cervical Cancer Prevention Program (NNBCCPP), and the Hopi Tribe-Hopi Women's Health Program (HWHP).
CDC requires central cancer registries to perform data linkages with the programs that administer the NBCCEDP within their states. The purpose of the linkage is to—
- Improve the quality of cancer stage and other diagnosis data in the Minimum Data Elements of the NBCCEDP.
- Eliminate the need for breast and cervical program staff to collect detailed information (stage, tumor size) on cancer diagnoses from providers.
- Confirm NBCCEDP diagnostic outcomes and treatment initiation.
- Identify missing cancer cases in the registry.
- Supplement the registry with missing data such as race and ethnicity.
The WWHCP maintains a strong relationship with tribal programs, and initiated the first teleconference with the Arizona Cancer Registry (ACR), NNBCCPP, and HWHP, providing an opportunity to discuss the agreement and data linkage requirements. As the ACR went through the process of developing agreements with the NNBCCPP and HWHP, the registry shares the following lessons learned for other programs as they move forward with tribal agreements.
- From the beginning, make sure to involve the right people in writing the agreement. Know the approval process and who is authorized to sign the agreement. The agreements required specific language to be included from the procurement department, the HWHP and the Hopi Tribe General Council, and the NNBCCPP and their Navajo Nation Oversight Committee.
- Do not list specific data items in the agreement. The agreement may need to be updated if additional data items are needed. Describe data items broadly. For example, list staging and treatment information instead of CS Lymph Nodes and Summary Stage.
- Do not specify the electronic layout or format of the data. For example, the file will contain a format agreed upon by both parties. Make the format simple, as some tribes may not have programming personnel.
- Think about how restrictions on the agreement may affect the ability to share information. We included an Acknowledgement of the Data Sharing Agreement with the New Mexico Tumor Registry (NMTR) and the Indian Health Service (IHS) so the agreements with Hopi and the Navajo Nation would not affect the ability to share information with the NMTR and IHS.
- Expect delays in the development of the agreement, to ensure that all parties include their specific legal language.
The WWHCP invited the ACR to their Retreat for Enhancing Tribal BCCEDP Collaborations. The event was well attended with representatives from Hopi and Navajo Nation, CDC, IHS, Susan G. Komen for the Cure, the American Cancer Society, and others. The registry presented an overview of the ACR, data linkage requirements and the process, our experience with data linkage with the WWHCP, and the status of our agreements. The registry discussed the desired file layout and answered questions. This opportunity will continue as a yearly event with our tribal partners.
The agreements are signed and the registry has conducted data linkages with the HWHP and the NNBCCPP. The HWHP traveled to the ACR and observed the linkage process. ACR answered their questions and provided them with staging and treatment information on women who had been screened and diagnosed with cancer. The registry identified additional breast cancer cases. The NNBCCPP linkage also was successful and ACR provided new information. After the linkage was conducted, the ACR was invited to present an overview of the cancer registry to the NNBCCPP.
Though the data linkage was a funding requirement for all of the programs, it provided an opportunity to enhance our relationships with tribal programs.