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Let's Discuss! Public Health Genomics

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We had another great R2R cyber-seminar this month.  Thank you to everyone who joined the seminar and especially to our wonderful speakers who shared their experiences and lessons learned in researching and implementing public health genomics programs for cancer control.  We were able to explore in-depth the great work that Michigan is doing with their state-wide collaborations and also to hear examples from Connecticut, Florida, and Colorado.    

But we know there are lots of others doing great work in this area too and we would love to hear from you and have you share your experience and knowledge...ask a question of the speakers or your fellow R2R members, let us know what your state or organization is doing in the field of public health genomics, and what tools/resources you and/or organization/community you have used in your cancer control planning and intervention efforts.  What lessons have you learned that others might benefit from?  

Join us in the discussion! 

If you would like to request a PDF copy of the slides from the seminar, please use the contact us link at the bottom of the page or email researchtoreality@mail.nih.gov.

If you missed the live seminar, the archive will be available approximately one week following the live session.  Watch and then come share your thoughts.  You can also watch our September 2010 R2R webinar on the archive to further explore this topic of Genomics.


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We are conducting a statewide

We are conducting a statewide study to learn more about etiology and outcomes of young Black women with invasive breast cancer.  We have partnered with our state cancer registry, The Florida Cancer Data System (FCDS), to obtain contact information of all eligible individuals within our sampling frame following regulatory approval.  The steps to approval include approval of our data request through the department of health (DOH), after which the proposal is submitted to the DOH IRB.  Our funding for this study is through a state specific funding mechanism for Florida investigators (the Bankhead Coley Research Program).  However based on the initial funding awarded in 2010 for this study, we have secured additional funding through national American Cancer Society. 

In parallel with these research efforts, we have partnered with community members (through our Community Advisory Panel), which has also resulted in increasing study visibility and likely contributed to our recruitment success.  We provide education and outreach pertaining to increasing awareness about inherited breast cancer in Black women through our B-GREAT Initiative (http://www.bgreatinitiative.com/).  This is achieved through disseminating a free brochure as requested (developed in conjunction with our community advisory panel) as well as speaking at various community events as requested.

One of the challenges we face is that all recruitment must be conducted through state mandated recruitment method, thus we are required to approach potential participants in a very specific way.  Thus we are very limited in how we can approach patients.  In order to enhance the initial introductory mailing to potential participants (and on the advice of our community advisory panel), we developed a colorful study brochure through pilot testing/interviews in breast cancer survivors (in order to gather feedback and refine this brochure), which was subsequently approved by the DOH IRB.  As well, recognizing the need to remain flexible, we ensure availability of study-related phone appointments outside of regular work hours (including evenings and weekends).

We have conducted studies about inherited breast cancer in young Black women over the last 10 years, which has led to refinement of our recruitment approaches, and tailoring of our study materials.  Our partnership with the community in this endeavor (through our community advisory panel) has been incredibly valuable to inform study procedures and most definitely contributed to our recruitment success.

Thank you for the opportunity

Thank you for the opportunity to participate in this webinar.  Can those of you working at/with public health genomics programs at your state health department tell me more about how these programs came to be?  Was it through a specific funding mechanism or research grant? How did you garner support from leadership at your state health department to establish your program? Thank you.  Jan Lowery

For background on our

For background on our program, the Connecticut Department of Public Health Genomics Office (DPH-GO) received a small grant award in 2011 from the U.S. Department of Health and Human Services to implement a “Healthy People 2020 Action Project”.   Connecticut’s project, entitled Cancer Genomics Best Practices for Connecticut Healthcare Providers, related to new Healthy People 2020 genomics objectives pertaining to hereditary cancers.

This 12-month grant supported our initiative to educate health care providers on hereditary cancers for which evidence-based recommendations exist for genetic counseling and testing. The cancers are hereditary breast and ovarian cancers and Lynch Syndrome, a genetic condition that predisposes people to early onset (under age 50) colorectal cancer and other cancers of the digestive tract.

 The project was a collaborative effort involving the DPH Genomics Office, the Connecticut Tumor Registry, state cancer control programs, and cancer registrars at the 31 acute care hospitals in state.

 Project Summary:

  • As recommended by hospital Cancer Registrars, select hospital staff received hospital-specific data reports on the number of diagnosed cancer cases during 2008-2009 who could be predisposed to hereditary breast and ovarian cancer syndrome or Lynch syndrome.  Data were provided by the Connecticut Tumor Registry.  Evidence-based recommendations from USPSTF, NCCN, and EGAPP, as well as other educational materials, accompanied the data reports. 
  • Follow-up Grand Rounds Training was offered by board-certified genetic counselors contracted by DPH-GO, with 70% of the hospitals receiving training.  In addition, one training session was  recorded  and  posted on the ‘TRAIN Connecticut’ distance-learning site.
  • Then, 900+ Connecticut physicians specializing in gastroenterology or obstetrics/ gynecology were sent educational packets and risk decision-support slide tools developed by DPH-GO.
  • To date, two hospitals have contacted the Connecticut Tumor Registry to assist with a retrospective  follow-up of diagnosed cancer cases.

With regard to barriers or supporting elements,our main barrier was the limited funding and short time frame (12 months); with a strong facilitating factor being the DPH-GO’s Expert Genomics Advisory Panel, whose members reviewed materials for accuracy and completeness.

Our Lessons Learned include:

  • Begin with models developed by other states, and modify based on state needs, partnerships, and resources available.
  • Develop relationship with and buy-in from hospital cancer registrars.
  • Contract for genetics expertise when no genetics counselor is in-house.
  • Hospitals’ perception of DPH changed from being one of regulatory to one of informative and helpful, and provides a relationship from which to build for further future efforts.

For additional information, please visit the DPH Genomics Website

Thanks,   Bev Burke, Genomics Coordinator



 

 

I was so delighted today to

I was so delighted today to receive CDC's Genomics and Health Impact newsletter and read about their new “clickable map” of public health genomics implementation activities.

The map is meant to provide a “one-stop shop” for finding information about programs and potential partners that may be relevant to implementation. 

For each of the cancer applications, there is a link to the state’s Comprehensive Cancer Control Plan (and to tribal plans, if they exist) as well as a direct link to specific goals and strategies that pertain to HBOC, Lynch syndrome, or cancer genetics in general. There is contact information for the state’s Cancer Registry, National Breast and Cervical Cancer Early Detection Program and Colorectal Cancer Screening Program, if one is available. If the state’s webpage includes a directory of cancer genetic counselors, this document is included; otherwise the National Society of Genetic Counselors “Find a Genetic Counselor” feature can be used.  The clickable map is meant to be a living document that will be updated on a regular basis. 

What a wonderful resource to add to this discussion!

Anyone else have any tools they would like to suggest and/or promote to their colleagues?