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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