Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study.
Megan YabumotoEmily MillerAnoushka RaoHolly K TaborKelly E OrmondMeghan C HalleyPublished in: Journal of medical Internet research (2022)
Patients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area.
Keyphrases
- social media
- health information
- genome wide
- healthcare
- copy number
- primary care
- end stage renal disease
- newly diagnosed
- ejection fraction
- chronic kidney disease
- prognostic factors
- case report
- dna methylation
- big data
- machine learning
- peritoneal dialysis
- mass spectrometry
- clinical practice
- human immunodeficiency virus
- men who have sex with men
- antiretroviral therapy
- artificial intelligence