| | | May 2012 | | [log in to unmask]&mfqid=7366687&mi=2425700&l=1&returnUrl=http://www.nccrcg.org">Forward to a Colleague | | Report from the 2012 NCC-Sponsored HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program | American College of Medical Genetics and Genomics Annual Clinical Genetics Meeting March 27-31, 2012 Charlotte, North Carolina Program Background and Overview Beginning in 2004, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB), awarded grants to seven Regional Genetic and Newborn Screening Service Collaboratives (RCs) and a National Coordinating Center (NCC) as part of larger on-going efforts to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. Formed as a partnership with the GSB/MCHB/HRSA through a cooperative agreement with the American College of Medical Genetics and Genomics (ACMG), the NCC supports the work of the RCs in a variety of ways. Through its role as a conduit for bringing educational opportunities to the RCs and facilitating their connections with national organizations, the NCC provided scholarships that enabled the RCs to select one or two active Advocate Leaders to attend the 2012 ACMG Annual Clinical Genetics Meeting through a special program seamlessly integrated into the overall conference. This program was modeled after the 2006-2011 ACMG-Genetic Alliance Advocate Partnership Program also held at the ACMG Annual meeting. In 2012, the program was restructured to focus on RC Advocate Leaders directly. Five of the seven RCs selected one or two Advocate Leaders involved in RC activities to attend the meeting (click here for a list of program participants). Emphasis was placed on broadening the Advocate Leaders' perspective of medical genetics by providing opportunities to build collaborations within the medical genetics and newborn screening communities as well as to interact with Advocate Leaders active in the other RCs. Special informal daily briefings with medical genetics professionals and ACMG, NCC and RC leaders from academia, healthcare, research, industry, and public health added to the participants’ experience. In addition, they benefitted from the mentoring and personal ambassadorship of genetic counseling graduate students from the University of Arkansas for the Medical Sciences(see article below, Genetic Counseling Graduate Students Add a New Dimension to Advocate Leaders’ Partnership Program). | |
| What We Learned: Post-Meeting Feedback | | Approximately two weeks after the Conference an eleven-question evaluation tool was sent to the RC Advocate Leaders and Genetic Counseling Student participants via SurveyMonkeyTM. Program participants responded to open-ended questions and were asked to rank several aspects of the program for the degree to which networking opportunities were available and for their long- and short-term value. From this evaluation we learned that: - 70% of the Advocate Leaders plan to keep in contact one another; the other 30% are not sure.
- 70% of the Advocate Leaders and genetic counseling students plan to remain in contact; 30% are not sure.
- The best opportunities for networking were during the luncheon briefings with Faculty, followed by informal conversations among group members and time spent in the Exhibit Hall.
- The three most valuable aspects of the overall Program were the Faculty lunch briefings, daily opportunities for the Advocate Leaders and the genetic counseling students to be together (over breakfast as well as informally), and the ability to network with other Advocate Leaders from the other RCs.
- The Faculty luncheon briefings and the opportunity to learn what Advocates are doing in other RCs, the handouts provided at the orientation session, and preparing a synthesis of their experiences in a 2-page summary report were rated most helpful to attendees with regard to the roles in their communities and RCs.
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| Genetic Counseling Graduate Students Add a New Dimension to Advocate Leaders Partnership Program | | Submitted by Lori Williamson Dean, MS, CGC, LGC, Interim Department Chair and Assistant Professor, Department of Genetic Counseling, University of Arkansas for the Medical Sciences and Program Coordinator, Heartland Genetics and Newborn Screening Collaborative As a result of “wearing two hats,” as interim director of a genetic counseling graduate program and program manager of the Heartland Genetics and Newborn Screening Collaborative, the idea came to me that the Advocates’ Partnership Program would provide a rich learning experience for my students, who would be attending the 2012 ACMG Annual Meeting. My rationale included: - Students are potentially less threatening to some Advocates than the professors and more senior geneticists they would meet during the faculty luncheon briefings.
- Genetic counselors have the unique communication skills to translate the complexity of the genome as it relates to health, and their interactions with the Advocates might afford them opportunities, outside of a clinical setting, to explain these concepts to their Advocate partners.
- A basic tenet of genetic counseling is to attempt to meet the client where the client is—to see the situation from the client’s perspective. Getting to know Advocate Leaders outside of a clinical setting could provide the students with opportunities to gain new insights into the impact genetic conditions can have on individuals and families.
- This partnership would expose the students to ACMG in a more intimate way, allowing them to also meet leaders in the clinical genetics and genetic counseling communities through the faculty luncheons.
- Overall, this pilot program could be a win for the Advocate Leaders, a win for the students, a win for ACMG and the NCC/RC system, a win for the genetic counseling program, and a win for Heartland RC.
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| HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program Participants | | ADVOCATE LEADERS
New England Genetics Collaborative
Virginia Pertillar
Citizens for Quality Sickle Cell Care
SCDAA - Northern, CT - Chapter, Inc.
New Britain, CT
Virginia is a member of the NEGC Advocacy Committee. She is also involved in an Innovative Project on adults with sickle cell disease, and she participates in the RC annual meetings. New York—Mid-Atlantic Consortium for Genetic and Newborn Screening Services
Mary Bentley LaMar
Founder and Executive Director
The Sickle Cell Association of New Jersey
Newark, NJ
Mary founded this community-based organization, which is a member of NYMAC as well as a grantee. Gloria Rochester
Program Coordinator
Queens Sickle Cell Advocacy Network, Inc.
Queens Village, NY
Gloria participates in NYMAC as a Collaborative Partner; the organization she represents serves as the New York State Chapter of SCDAA. Southeast NBS & Genetics Collaborative
Melissa Perez
Tallahassee, FL
Melissa is a representative to the SERC Consumer Alliance and a PKU parent. Heartland Genetics and Newborn Screening Collaborative
Mark A. Smith, MS
Consumer Family Program Coordinator
University Center on Disabilities
Munroe-Meyer Institute on Genetics and Rehabilitation
Omaha, NE
Mark is a family/parent advocate and has been involved with Heartland since its inception. In addition to his service with the Advocate workgroup, he is also a member of the NBS workgroup and serves on the Genetics Systems Assessment (GSA) Expert Panel.
Mountain States Genetics Regional Collaborative Center
Melanie Wiseman, MSN, RN and William (Marc) Wiseman
Cedar Park, TX
Melanie and Marc are members of the MSGRCC Consumer Advocacy Workgroup, as well as the parents of a daughter with methylmalonic acidemia.
GENETIC COUNSELING GRADUATE STUDENTS
University of Arkansas for Medical Sciences, College of Health Related Professions
Erin Berry
Alicia Hernandez
Angela Jackson
Julie Kaylor
Jeanine Schulz
Katy Williams |
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| Thank You to the Advocate Leaders Partnership Program Faculty | | A highlight of the HRSA Genetics Collaboratives’ Advocate Leaders Partnership Program was the daily luncheon briefing sessions. During these 90-minute meetings, up to three faculty members presented one or two topics from the conference they found important, and related these to their work. These intimate and informal discussions sparked lively conversations, generating many questions from the Advocate Leaders to the faculty. The Faculty were selected for their expertise and leadership in clinical, laboratory and public health genetics, as well as their roles in the College and the NCC/RC system, so that a breadth of perspectives were represented. The interactions between the Advocate Leaders and the faculty were noted as a stimulating, rewarding and enjoyable experience for all participants, during which there never seemed to be enough time to say everything! The following individuals volunteered their time to serve as Partnership Program Faculty. We list them below, with much gratitude: Sylvia M. Au, MS, CGC
Project Director
Western States Genetic Services Collaborative
Genetics Program
Hawai’i Department of Health
Honolulu, HI Natasha F. Bonhomme
VP of Strategic Development
Genetic Alliance
Washington, DC Sara Copeland, MD,
Chief, Genetics Services Branch
HRSA/MCHB/DSCSHN
Rockville, MD Anthony Gregg, MD, FACMG
Professor and Director
Division of Maternal-Fetal Medicine
Department of Obstetrics and Gynecology
University of Florida
Gainesville, FL Amy J. Hoffman, MPH, CCRA
Project Manager
Newborn Screening Translational Research Network
American College of Medical Genetics
Bethesda, MD Bruce Korf, MD, PhD
Professor and Chair, Department of Genetics
Director, Heflin Center for Genomic Sciences
University of Alabama at Birmingham
Birmingham, AL Monica McClain, PhD
Project Manager
New England Genetics Collaborative
University of New Hampshire
Durham, NH Gloria Weissman, MA
MCH Consultant
NCC/ACMG
7220 Wisconsin Avenue, Suite 300
Bethesda, MD Klaas Wierenga, MD, MSC, FACMG
Co-Project Director
Heartland Genetics and Newborn Screening Collaborative
Associate Professor
Section of Genetics, Department of Pediatrics
University of Oklahoma Health Sciences Center
Oklahoma City, OK |
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