Innovations in Service Delivery in the Age of Genomics Workshop Summary (2009) / Chapter Skim
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2 Genetic Service Delivery: The Current System and Its Strengths and Challenges
2 Genetic Service Delivery: The Current System and Its Strengths and Challenges
Pages 3-20
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From page 3... ...
. To accurately assess what the future of genetic service delivery will look like, a necessary first step is to collect information about the current system.
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From page 4... ...
Just as the definition of genetic services varies, genetic service providers are an equally indistinct group. Genetic service providers can be categorized into two general groups: those who are formally trained and certified in genetics (e.g., genetic counselors, medical geneticists, genetics nurses)
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From page 5... ...
Another important component of understanding the current system for delivery of genetic services is identifying where these services are provided. The GSPP compiled information from professional organizations such as the American College of Medical Genetics, the International Society of Nurses in Genetics, and the National Society of Genetic Counselors.
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From page 6... ...
As the GSPP gathered data and attempted to characterize the state of the current genetic service delivery system, several data gaps were identified, some of which have been mentioned. Claims data are severely limited in their usefulness because CPT codes are highly variable and not specific enough to identify when genetic services are being provided.
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From page 7... ...
For example, at one end of the trajectory, research practices have implications for health disparities and the health of underserved populations, since the use of race constructs in genome research or the conceptualization and operationalization of measures of environment can influence our understanding of the effect of these variables on the health of different populations. At the other end of the trajectory, as research is translated into clinical practice, there are disparities in provider knowledge and readiness, health system capacity, consumer willingness to undergo genetic testing, and coverage and financing of health care services.
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From page 8... ...
used these NHIS data, in conjunction with the 1999 National Comprehensive Cancer Network guideline criteria, to identify about 35,000 women with no personal history of breast or ovarian cancer and to stratify them into high risk or average risk for hereditary breast or ovarian cancer. Of these, 42 percent of the average-risk women had heard of genetic testing for cancer risk, compared to 55.2 percent of the high-risk group.
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From page 9... ...
When these data were analyzed to identify characteristics of CHCs that predicted provision of genetic testing, it was found that those centers with the highest specialist-to-patient ratios, those with the most black patients, and those with the most Latino patients were about twice as likely to provide genetic testing as those centers with lower ratios and fewer minority patients. Interestingly, in this case, the main predictor of genetic service provision was size: centers that served more than 10,000 patients were six times more likely to offer services than smaller centers.
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From page 10... ...
The Harvard/MGH Center on Genomics, Vulnerable Populations & Health Disparities is working to help answer these questions, expanding methods for capturing genomic medicine in administrative data, conducting patient surveys, and exploring the idea of using electronic health records to collect data for use in studying health disparities. One of the key measures against which the investment in genomics research should be judged is its ultimate impact on the health of underserved populations.
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From page 11... ...
According to Ota Wang, translating genetic information into something that people can comprehend requires understanding four crucial elements of cognitive psychology: how information is categorized, where attention is focused, how information is processed, and what is culturally responsive communication. First, in terms of categorization, when humans absorb new information, they use five factors to categorize what they are processing: similarity, simplification, proximity, continuity, and perception.
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From page 12... ...
Northwestern University Many different types of professionals provide genetic services to patients, including genetic counselors, medical geneticists, and genetics nurses. As genetic and genomic technologies are incorporated into mainstream medicine and patients learn about and request these services, it will be essential to have an adequate workforce to meet the demand.
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From page 13... ...
In addition to accreditation, the ABGC certifies genetic counselors, requiring recertification every 10 years through examination or continuing education. Unlike some other health care professionals, genetic counselors are not typically licensed.
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From page 14... ...
The National Society of Genetic Counselors has developed a strategic plan to address these challenges that includes • pursuit of federal legislation that recognizes genetic counselors as health care providers, • support for states in the effort to license genetic counselors, • development and growth of relationships with third-party payers, • exploration of alternative service delivery models, • monitoring trends in health care to determine how genetic counsel ing can fit in, • formation of partnerships with other providers to support integra tion efforts, • working with the ABGC and the Association of Genetic Counseling Program Directors to address workforce issues, and • identification of the needs for continuing education. In addition, the ABGC will begin to offer the genetic counselor board exam annually in an effort to support licensure efforts and increase the availability of clinical training sites.
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From page 15... ...
The current workforce is not expected to meet patient care needs in the next 5 to 15 years, and young physicians are not entering the field. The American College of Medical Geneticists hosted two conferences (called the Banbury Conferences)
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From page 16... ...
Genetics Nurses Genetics nurses may perform one or more of the following duties, depending on their specialties: • obtain a detailed family history and prepare a pedigree, • assess and analyze disease risk factors, • identify potential genetic conditions or genetic predispositions to disease, • provide genetic information and psychosocial support to individuals and families, • provide nursing care for patients and families at risk for or affected by diseases with a genetic component, • provide genetic counseling, and • facilitate genetic testing and interpret genetic test results and labo ratory reports. Nurses with a bachelor's degree from an accredited nursing program can become certified genetics clinical nurses by submitting a portfolio to the Genetic Nursing Credentialing Commission (a subsidiary of the International Society of Nurses in Genetics [ISONG]
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From page 17... ...
Discussion Wylie Burke, M.D., Ph.D., Moderator One participant asked the panel if any data were available about how many patients actually want genetic testing and are willing and able to receive the results. Sharon Terry reported that the Genetic Alliance surveyed about 6,000 individuals with genetic conditions and found that overall patient satisfaction with information and services provided by physicians or other genetic service providers was low. Patients reported that they obtained better information from websites and support groups than from their providers.
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From page 18... ...
Wicklund commented that genetic counselors are undergoing a culture shift and will have to challenge themselves not to discount something immediately because it is not traditional genetic counseling. She noted that some genetic counselors are upset about the advent of direct-toconsumer marketing, and she remarked that whether counselors approve of this or not, it is a reality, and they will have to adapt in order to meet these challenges.
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From page 19... ...
Finally, one participant inquired about the level of genetic knowledge provided for "everyday practitioners" in medical school, osteopathic school, or nursing school. Lochner Doyle reported that the literature shows that not only do practitioners feel ill equipped or uncomfortable in their own delivery of genetic services (Gennaccaro et al., 2005; Giardiello, 1997; Menasha et al., 2000)
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