3.1. Broad Overview of State Activities
All three grantees proposed education, surveillance, and policy activities in accordance with the FOA and consistent with state-based priorities. Grantees developed or enhanced activities for the promotion of breast cancer genomics. Activities were designed to increase appropriate BRCA 1/2 counseling and testing, increased insurance coverage of BRCA 1/2 and related clinical interventions for appropriate women, and included the development of educational programs to further the public’s and health care providers’ knowledge about family history, risk assessment, and the appropriateness of BRCA1/2 counseling and testing. Next, we briefly describe examples of state-specific activities.
Educational activities were directed at the public and health care providers. Health care providers were educated by using in-person conferences, online modules and webinars, and provider newsletters. Both Georgia and Oregon, with CDC and other partners, collaborated with Michigan to create an online educational module for health care providers, which addressed the assessment of cancer family history for genetic risk and appropriate referral to genetic counseling and testing. All grantees included promotion and dissemination of this module in their educational efforts. Patient education activities conducted by the grantees included the development of web pages, lectures, newsletters, displays at health fairs, and information provided at clinician’s offices. Some of these public health activities were intended for high-risk populations, such as young breast cancer survivors and individuals of Ashkenazi-Jewish decent.
Many of the surveillance activities used existing infrastructure, such as adding questions to the state’s annual Behavioral Risk Factor and Surveillance Survey (BRFSS) and analyzing state cancer registry data. Michigan and Oregon also used state cancer registry data to identify individuals with cancer diagnoses indicative of possible HBOC, and reported those cases back to the provider and cancer survivor, if possible, along with educational information about genetic counseling and testing (a process known as bi-directional cancer registry reporting). In addition, new surveillance systems were developed with key partners and stakeholders to assess uptake of HBOC genetic counseling, testing, and follow-up services. Michigan and Oregon developed new cancer genetic counseling and testing surveillance programs by partnering with genetics clinics across their respective states to collect data about patients accessing HBOC counseling services, including testing outcomes and follow-up services. Georgia conducted a survey of breast cancer survivors in their state to assess the uptake of genetic counseling, and the state tested and surveyed first and third-year primary care medical residents about their knowledge of HBOC and genetic counseling and testing recommendations. Georgia also collaborated with nine public health clinics across the state to integrate a genetic cancer risk-screening tool into their clinical intake process.
Policy and systems change activities across all three states were fairly similar. All programs worked with health insurance companies, including private and, where possible, public options in their states, to ensure that coverage policies were consistent with evidence-based recommendations for referral to genetic counseling and testing (e.g., the USPSTF or National Comprehensive Cancer Network®, (NCCN®, Washington, PA, USA) Clinical Practice Guidelines In Oncology (NCCN Guidelines®, Washington, PA, USA)). This work was accomplished in a variety of ways depending on the state, but included meeting with health insurance plan medical directors, conducting key informant interviews and focus groups with health plan administrators to assess barriers and facilitators to having evidence-based coverage policies, and developing and disseminating policy guidance documents for insurers. Each state worked collaboratively with their state comprehensive cancer control (CCC) program; genomics objectives and activities were newly incorporated into Georgia’s CCC plans.
Grantees also worked with governmental entities to improve cancer genomics practice within their respective states. For instance, Oregon worked with partners and provided educational materials about the importance of licensure for genetic counseling. As in many states, genetic counselors are not licensed in Oregon, thus creating barriers for use of services. Georgia, through the state Breast Cancer License Plate Program, created a fund to cover costs of genetic testing for at-risk, underserved women. Michigan disseminated, at no cost, educational brochures with model informed consent forms, as aligned with a state law that requires written informed consent to be obtained by the ordering health care provider before presymptomatic or predictive genetic testing.
Impact of Selected, Key State Activities
To describe outcomes of the cancer genomics FOA, the DCPC traced the impact of key state education, surveillance, and policy activities by using CDC’s science impact framework [18
] illustrative examples from each state are presented here (Table 1
). This is the first time that this framework has been used to show the impact of state cancer genomic activities.
Example state activities addressing hereditary breast and ovarian cancer, 2011–2014.
Example state activities addressing hereditary breast and ovarian cancer, 2011–2014.
|State||Activity||Brief Description of Activity||Type of Activity: Education, Surveillance, or Policy|
|Michigan Department of Health and Human Services (Michigan)||Identification of educational needs followed by development and dissemination of a free online educational module with CMEs||Michigan identified health care provider knowledge gaps by using surveys and other data sources. A free, online, educational module was then developed with attached Continuing Medical Education credits (CMEs) called, Hereditary Breast and Ovarian Cancer: Is Your Patient at High Risk?||Education|
|Honoring health insurance plans for having evidence-based genomic services policies||Michigan reviewed health insurance company policies on BRCA counseling, testing, and related clinical services and gave nonmonetary awards to health plans for having written policies consistent with evidence-based recommendations. They also held focus groups with eight health plan administrators to understand and address barriers and facilitators to the uptake of evidence-based policy by health plans.||Policy|
|Georgia Department of Public Health (Georgia)||Incorporating a hereditary cancer risk assessment tool into clinical practice||Georgia incorporated a risk assessment tool, the Breast Cancer Genetics Referral Screening Tool (B-RST), into clinical practice in 9 of 18 public health districts across the state. The screening tool quickly identified women seen at these public health clinics who were appropriate for referral to genetic counseling. Before the incorporation of the tool in the nine health centers, an educational program was provided for all clinical and clerical staff who provided services to women.||Surveillance and Education|
|Oregon Health Authority (Oregon)||Tracking and promotion of genomics services in the Oregon Medicaid program.||Oregon worked closely with its state Medicaid program to track and promote use of evidence-based genomic tests.||Surveillance and Policy|
|Bidirectional reporting between the cancer registry and cancer survivors and physicians.||Oregon implemented bidirectional reporting (i.e., cancer survivors who were likely to be appropriate for BRCA counseling were identified, and they and their doctors were notified and received educational materials through the Oregon State Cancer Registry).||Education and Surveillance|
The science impact framework is used for tracking CDC science and linking its influence or impact on subsequent events and actions that ultimately lead to improving health. The framework is meant to be used in a variety of disciplines and can be used in other settings. It can be used to track the impact of any body of scientific work including, but not limited to, a manuscript from a research study, the development of a public health guideline, or work resulting from a grant application, and can be applied to domestic and international programs which address other health conditions. The framework is an adaptation and extension of the Institute of Medicine (IOM) Degrees of Impact framework [19
] and was developed in 2012 by a workgroup of CDC scientists. Rather than relying on traditional measures of impact or dissemination (e.g., bibliometrics), the science impact framework takes the broader societal, environmental, cultural, and economic value into consideration and uses narrative, quantitative, and qualitative indicators. Because impact often takes a long time to become apparent, the focus is on uncovering short-term indicators that are indicative of long term impact.
The framework (Figure 1
, Table 2
) is a series of five domains of scientific influence that define degrees of impact and may not be chronological; events do not have to happen in every domain, and the degree of impact is not a progression (feedback at all levels is possible). The five domains are Disseminating Science, Creating Awareness, Catalyzing Action, Effecting Change, and Shaping the Future. Disseminating Science includes generating and communicating knowledge by the producer. Key indicators for this include publications of findings in the peer-reviewed literature, presentations at conferences or meetings, and other dissemination efforts. Creating Awareness represents the uptake of knowledge and further dissemination and dialogue by the user, and acceptance of a concept or findings by others, including those in the scientific or public health community or policy makers. Key indicators include receipt of awards, stakeholder-created resources, curriculum or training, receipt of feedback from others through surveys, focus groups, anecdotes, information sharing, and communications among professional societies, or receipt of queries from outside groups. Catalyzing Action reflects the adoption of knowledge resulting in specific actions. Indicators could include partnerships and collaborations, technology creation, or introduction into public health or clinical practice. Effecting Change includes changes to current or existing situations, directions, strategies, policies, or practice. Indicators could include building public health capacity; legal or policy change; cultural, social, or behavioral change; or economic change. Shaping the Future is characterized by the implementation of new activities based on the initial activity or furthering improvements and changes. Key indicators could include new hypotheses, continuous quality improvement, or the implementation of public health programs or initiatives. The science impact framework is a framework emphasizing influence and categorization of activities into the various domains is a bit arbitrary; one activity could possibly be placed in a variety of categories. We placed activities in the one domain they best fit into based on the intent of the activity. Ultimately, it is less important in which domain individual activities are categorized than describing how activities are linked together.
The science impact framework [18
The science impact framework [18
The domains of influence within the science impact framework and example indicators (modified from [18
The domains of influence within the science impact framework and example indicators (modified from ).
|Domain of Influence||Potential Measureable Indicators|
|Disseminating Science: Generating and communicating knowledge by the producer|
Scientific publications (open access journals)
General communication (social media, web, print)
Other scientific output (e.g., CDC Public Health Grand Rounds, Vital Signs, Science Clips)
|Creating Awareness: The uptake of knowledge and further dissemination and dialogue by the user, and acceptance of a concept or findings by others|
Continuing Education (CME, CEU)
Stakeholder resources, curriculum, training
Feedback (Survey, focus groups, anecdote)
Information sharing and communications among professional societies
Electronic communications (information shared on listservs and other electronic resources, social media, news coverage)
Requests to contribute to efforts that further the science output
|Catalyzing Action: Adoption of knowledge resulting in specific actions|
New funding (pilots/research)
Partnerships and collaborations
Research & Development
Office practice/point of care changes
|Effecting Change: Changes in current or existing situations, directions, strategies, policies, or practice|
Building public health capacity (e.g., workforce development, funded research, improved staff competency)
Creation of registries/surveillance
Other payer actions
(New) formal guidelines and recommendations (e.g., WHO)
Sustainable and scalable science translation
|Shaping the Future: Implementing new or furthering improvements and changes|
New hypotheses/Continuous Quality Improvement
Implementation of public health programs/initiatives
Prevalence and incidence
Morbidity and mortality (e.g., frequency of outbreaks, trends)
Quality of Life improvements
Reductions in economic burden