Implementing a screening tool for identifying patients at risk for hereditary breast and ovarian cancer: a statewide initiative.

BACKGROUND: The Georgia Breast Cancer Genomic Health Consortium is a partnership created with funding from the Centers for Disease Control and Prevention (CDC) to the Georgia Department of Public Health to reduce cancer disparities among high-risk minority women. The project addresses young women at increased risk for hereditary breast and ovarian cancer (HBOC) syndrome through outreach efforts. METHODS: The consortium provides education and collects surveillance data using the breast cancer genetics referral screening tool (B-RST) available at www.BreastCancerGeneScreen.org . The HBOC educational protocol was presented to 73 staff in 6 public health centers. Staff used the tool during the collection of medical history. Further family history assessments and testing for mutations in the BRCA1/2 genes were facilitated if appropriate. RESULTS: Data was collected from November 2012 through December 2013, including 2,159 screened women. The majority of patients identified as black/African American and were 18-49 years old. Also, 6.0 % (n = 130) had positive screens, and 60.9 % (n = 67) of the 110 patients who agreed to be contacted provided a detailed family history. A total of 47 patients (42.7 %) met National Comprehensive Cancer Network guidelines when family history was clarified. Fourteen (12.7 %) underwent genetic testing; 1 patient was positive for a BRCA2 mutation, and 1 patient was found to carry a variant of uncertain significance. CONCLUSIONS: The introduction of genomics practice within public health departments has provided access to comprehensive cancer care for uninsured individuals. The successful implementation of the B-RST into public health centers demonstrates the opportunity for integration of HBOC screening into primary care practices.

The leadership labyrinth: leveraging the talents of women to transform health care.

Women have had a transformative influence on the health care field as highly effective leaders known to produce superior results. Women make up the vast majority of the health care workforce as well as health care graduates. Women also make most health care decisions on behalf of their families. Yet, despite this omnipresence in health care, there is a dearth of women in chief executive and governance roles. A lack of leadership development and succession planning in health care and other obstacles to career progression make it challenging for women to advance to top leadership levels. The traditional linear career ladder that has existed in health care is not conducive to women's advancement. Women have taken a different pathway to career development referred to as the leadership labyrinth. This is a development process leading to wisdom and insights essential for today's health care challenges. This crucial stage in the evolution of health care calls for new models of care and leadership. The most abundant resource at risk of being overlooked is the optimal engagement of women. Women leaders are the backbone of the health care workforce but have yet to be strategically deployed in key leadership positions. The talents of women leaders can be a significant factor in the transformation of health care.

Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies.

Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors' reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors' and relatives' respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.

Shared vision, collective impact, and persistent challenges: the first decade of Georgia's oncology research network.

Ten years ago, Georgia was lauded for dedicating a portion of tobacco settlement funds to the Georgia Cancer Coalition (GCC). The plan championed by then-Governor Roy E. Barnes was designed to make Georgia a leader in prevention, treatment, and research. This plan called for the expansion of clinical trials to ensure Georgians had access to the highest quality care based on the most current treatments and discoveries. As a result, oncologists in the state were engaged in a planning process that resulted in a shared vision to improve the quality of cancer care through research and the formation of a new organization: the Georgia Center for Oncology Research and Education.