Genomics and Population Health Action Collaborative (GPHAC) Interviews

Genomics and Population Health Action Collaborative

Questions:

1. Please tell us about any prior experiences with genetics/genomics activities related to screening or treatment for hereditary cancers.

Possible Follow-Up Questions

• What lessons have you learned from these prior or existing efforts?

• We are particularly interested in anything your department is doing to track, promote, or implement efforts, guidelines, and recommendations for hereditary breast and ovarian cancer.

• What efforts, if any, are you taking specifically to promote the US Preventive Services Task Force guidelines for hereditary breast and ovarian cancer screening and the Evaluation of Genomic Applications in Practice and Prevention (EGAPP) recommendations for universal tumor screening for Lynch syndrome?

• Are you aware of any other efforts in your state related to screening or treatment for hereditary cancers?

2. Does your state health department earmark any funding for integrating genetics into chronic disease prevention programming, specifically for screening for hereditary cancers? Are these resources part of normal operating budgets, or are they grant funded?

3. What types of legislation, if any, does your state have that pertain to screening or treatment for hereditary cancers?

Possible Follow-Up Questions

• For example, does your state have any requirements for obtaining informed consent before genetic testing, or laws/regulations that require coverage for screening or treatment?

• Does your state have any privacy laws that prohibit contacting individuals identified as high risk? What about other barriers to bidirectional reporting?

4. What types of staffing resources does your state health department dedicate to genetics/genomics activities related to screening or treatment for hereditary cancers?

Possible Follow-Up Questions

• How are staff resources structured within your health department (i.e., do you all belong to the same unit)? Do you encounter any barriers cooperating with colleagues in other units? [Ask if they have an org chart they could send to us.]

• Do you think these staffing resources are adequate? If not, what would you consider optimal?

5. We would like to ask now about any personnel, both internal and external partners/collaborators, who have influenced the genetics/genomics activities related to screening or treatment for hereditary cancers in your state.

Possible Follow-Up Questions

• Have you identified any internal champions who have been especially helpful and committed to promoting the integration of genomics into your activities?

• Have you formally appointed any internal implementation leaders (e.g., project managers, coordinators)?

• What are the qualities that make these individuals appropriate for and effective in this role? (Identifying Champions)

• What external partnerships, collaborations, or change agents (for example, external consultants) have you engaged in to support genomics implementation? (Forming Partnerships)

• Have you encountered any barriers in forging alliance and collaborations, and if so, how have you overcome them?

6. How would you rate your current level of interest in screening or treatment for hereditary cancers at the population health level?

Possible Follow-Up Questions

• To what degree is that level of interest shared by others in the department?

• Has the research evidence persuaded you that screening for hereditary cancers should be a priority in public health programming? (Evidence Strength)

• Compared to other public health priorities, how important is screening for hereditary cancers, in your view? To what degree is that view shared by others in the department?

7. What types of training efforts or educational materials have you tried using to encourage interest in screening for hereditary cancers within your health department?

Possible Follow-Up Questions

• What types of training efforts have you used to promote screening outside the health department?

8. What types of tools and resources are available to support your state health department in broadening screening for hereditary cancers?

Possible Follow-Up Questions

• For example, do you have an advisory committee that advises you on programming and implementation?

• Have you analyzed existing public health surveillance data to determine the public’s interest in screening for hereditary cancers or to assess barriers in accessing services (e.g., BRFSS, state cancer registry)?

• Have you tried to create any new surveillance systems to gather information about the need for screening for hereditary cancers in your state?

• What, if any, efforts have been made to address disparities (e.g., racial/ethnic, rural/urban)? For instance, have there been any efforts to expand access and improve population health, such as through telegenetics?

9. Does your team monitor and document successes and failures in your efforts to expand screening for hereditary cancer syndromes? If so, how and what have you learned from these evaluations?

10. We are working on compiling information on different approaches used by states to implement genetics/genomics activities. What type of information would be useful for you to have? How would you find it most helpful for us to organize this type of information? Please describe any approaches or frameworks (ex: core public health functions) that your department uses to structure its work.

11. Is there anything else you would like to add on this topic?

Possible Follow-Up Questions

• Are there any additional issues or concerns that you would like to share?

• What other types of genetics-related programs currently exist within your department?