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

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

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

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