Using Registry Data for Provider Education and Systems Change

  • Staff time
  • Contracts with relevant organizations
  • Funds for developing and printing resources
  • Time-intensive
  • Partnering with health systems, clinics, and providers
  • Increased provider knowledge
  • Improved referral rates to genetic counseling services

State health departments have used the results of their analyses on hereditary cancer burden to include localized data in provider education trainings and resources. States disseminated results and other information to providers through presentations, conferences, webinars, and print resources such as booklets and informational packets. States used data from the cancer registry to inform providers and institutions about patients who were potential candidates for genetic counseling or testing for Hereditary Breast and Ovarian Cancer syndrome (HBOC) or Lynch syndrome (LS). State health departments can implement these activities with varying intensities depending on their resources. Low-intensity implementation has included using site-specific data in educational materials, while high-intensity implementation included using results to work directly with health care systems to affect provider behavior and change policies and practices on referral to cancer genetic services.


Colorado collaborated with three urban hospitals to test using registry data to identify patients at risk for hereditary cancer syndromes, then review medical records to determine if they had been referred to genetic services. They found that only half of eligible patients overall were referred for genetic services, and only 20% of patients at increased risk for LS were referred. The health department conducted interviews and focus groups with hospital staff to assess feasibility and sustainability of the project. This was a time-intensive activity for the genetic counselors at participating hospitals, who were responsible for most of the project implementation and evaluation. One hospital used a summer intern to complete the activity and perceived the activity as less burdensome. Results of the project were a catalyst for health systems to improve hospital referral processes through policy changes and provider feedback interventions. In addition, two of the hospitals were able to use the activity as a quality improvement project to meet Commission on Cancer accreditation requirements.


Washington used data from the Washington State Cancer Registry and the Surveillance, Epidemiology, and End Results (SEER) Program at the Fred Hutchinson Cancer Research Center to create The Heritable Cancer Facility Profiles for health care facilities that report cancer data to these registries. The Heritable Cancer Facility Profiles served as a learning tool for staff at these facilities to recognize at-risk populations and help connect patients with additional health resources. By raising awareness and educating health care facilities, the Profiles led to discussions within the health care facilities about policy changes that could increase the identification of people and their families with hereditary cancer syndromes.

Each site-specific facility profile was distributed to management staff such as the chief medical officer, patient care service executives, oncology clinic managers, and pathology laboratory managers. The facility profiles highlighted the number of cases at each site and included educational material and information on HBOC and LS, how at-risk people may benefit from additional genetic evaluation, and the locations and contact information of cancer genetic service providers in Washington.