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
- healthcare
- genome wide
- end stage renal disease
- primary care
- copy number
- chronic kidney disease
- ejection fraction
- mental health
- newly diagnosed
- peritoneal dialysis
- gene expression
- case report
- prognostic factors
- clinical trial
- high resolution
- deep learning
- machine learning
- hiv infected
- artificial intelligence
- smoking cessation
- big data
- human immunodeficiency virus
- patient reported outcomes
- hiv testing
- double blind
- affordable care act