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Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop (2018)

Chapter: Appendix A: Summary of the Pre-Workshop Twitter Chat

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Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
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Appendix A

Summary of the Pre-Workshop Twitter Chat

Twitter Chat: June 21, 2018
#GenomicsDisparities
Summary of Discussion

Question #1: What are the biggest challenges faced by #patients when they are trying to access genetics-based services (i.e., genetic tests and counseling)? #GenomicsDisparities

  • Accessibility, geographical location, language barriers, and insurance coverage
  • The subconscious biases of health care providers, which may limit referral of some groups for genetic services (i.e., assuming that a patient has a lack of interest in genetics or that insurance will not cover testing)
  • Many patients do not know (1) where to start, (2) that certified genetic counselors exist, and (3) that insurance often covers these services, by phone or in person
  • Health care providers are uncomfortable interpreting and ordering genetic tests
  • Differing state laws regarding genetic discrimination
  • Fear of genetic discrimination and a lack of understanding about genetics and screening options
  • The lack of a connection between genetic counselors and primary care physicians
Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

Question #2: What are some ways to increase access to #genetic services in medically #underserved and minority communities? #GenomicsDisparities

  • Meet patients where they are at by using community-based participatory research programs and building trust with community partners
  • Educate primary care physicians, registered nurses, and physician assistants about outreach clinics and telegenetic services
  • Improve coverage for genetic counseling services for all payers, including Medicare and Medicaid
  • Diversify the clinical genetics workforce
  • Use state public health programs to increase genetic services
  • Increase education and awareness about genetics in underserved communities, including in middle and high schools
  • Integrate new service delivery models (i.e., telegenetics) in training for genetic counselors and geneticists
  • Use patient navigators
  • Provide family screening and cascade testing in clinics
  • Increased inclusion of underserved and minority communities in genomics research

Question #3: How can health systems and providers, including those who work at community clinics, take steps to provide better access to #genetic services? #GenomicsDisparities

  • Take a population health view of genetic services
  • Increase prevention and early intervention of hereditary conditions
  • Forge partnerships between larger health centers and community practices to fill gaps in expertise
  • Increase education in medical school about genetics, and provide continuing education for clinicians
  • Do not make assumptions about what a patient would want in regards to genetic services, especially if they are based on age, economic status, or ethnicity
  • Improve health literacy concerning genetic services
  • Encourage hospital systems to hire genetic counselors
  • Increase communication between clinicians and with patients to foster better relationships and trust
  • Develop patient-center education resources, in multiple languages, that cover topics such as insurance coverage and the role of preventative, diagnostic, and treatment care
  • Make use of community health workers
  • Increase research in implementation science
  • Use targeted screening protocols to best identify those who need genetic testing
Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

Question #4: Are there lessons we can learn from other areas of #medicine or #technology about how to provide equitable access to #genetic services? #GenomicsDisparities

  • Use prenatal and newborn genetic testing as an example of evidence-based genetic medicine, and make it the standard of care
  • Implement community-based participatory research methods and diversifiy research populations
  • Integrate genomic data into electronic medical records and use the work of the eMERGE network as a model to create equitable access (https://www.ncbi.nlm.nih.gov/books/NBK316475)
  • Use CDC strategies to overcome health disparities as a model for genomics (https://www.cdc.gov/minorityhealth/strategies2016/index.html)
  • Look toward technology innovation as a model, and see how it meets consumer needs and provides them in an affordable, scalable way
  • Engage with patient and community organizations to disseminate health care messages
  • Use the model of improving access to dental care to underserved populations, as shown by a 2011 Institute of Medicine and National Research Council consensus study (https://www.nap.edu/catalog/13116)
  • Look at past partnerships between health care and public health systems as a model to implement genetic services at the population level
Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×

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Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 75
Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 76
Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 77
Suggested Citation:"Appendix A: Summary of the Pre-Workshop Twitter Chat." National Academies of Sciences, Engineering, and Medicine. 2018. Understanding Disparities in Access to Genomic Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
×
Page 78
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Genomic medicine is defined as the routine use of genomic information about an individual as part of his or her clinical care as well as the health outcomes and policy implications of that clinical use. It is one approach that has the potential to improve the quality of health care by allowing practitioners to tailor prevention, diagnostic, and treatment strategies to individual patients. In recent years, research breakthroughs, technological advances, and the decreasing cost of DNA sequencing have led to the wider adoption of genomic medicine. However, as with the introduction of new technologies into health care, there are concerns that genetic and genomic testing and services will not reach all segments of the population both now and in the near future, and there remains a gap in knowledge regarding potential health care disparities in genomic medicine and precision health approaches.

On June 27, 2018, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop to examine the gaps in knowledge related to access to genomic medicine and to discuss health care disparities and possible approaches to overcoming the disparate use of genomic medicine among populations. Workshop participants discussed research on access to genetics and genomics services in medically underserved areas, model programs of care for diverse patient populations, and current challenges and possible best practices for alleviating health care disparities as they relate to genomics-based approaches. This publication summarizes the presentations and discussions from the workshop.

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