Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.

PURPOSE: Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies. METHODS: We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria. RESULTS: Most studies were observational (n = 114, 95.0%) and cross-sectional (n = 107, 89.2%), and more than half (n = 69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when reported, were predominantly female (70.1% ± 22.5%) and white (85.0% ± 11.0%) adult patients and caregivers. CONCLUSION: Despite its potential benefits in rare disease research, the use of social media is still methodologically limited and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type. As scholars explore using social media for rare disease research, careful attention should be paid to representativeness when studying this diverse patient community.

Accessing perinatal substance use disorder care in your local community: A case study of an innovative hub and spoke network in western North Carolina.

INTRODUCTION: The incidence of substance use disorders (SUD) in the general population and in the pregnant person population has risen over the last 20 years. Concurrently, both perinatal and SUD care in rural areas is laden with access barriers including but not limited to geographical distance from potential treatment and stigma. An integrated outpatient perinatal substance use disorder (PSUD) clinic in an urban area in western North Carolina (WNC) found that patients who traveled further for prenatal care were less likely to continue seeking care in the postpartum period. Acknowledging that the risk of overdose increases in the postpartum period, the PSUD clinic utilized a hub and spoke model to promote healthcare accessibility. METHODS: The clinic adapted the Vermont hub and spoke model and the CHARM (Children and Recovering Mothers) collaborative. The urban hub in WNC has now developed eight spokes in rural communities. The hub provides education and technical assistance to the rural spokes, and the two engage in bidirectional referral pathways. This manuscript details the model and analyzes the existing strengths and barriers at two spokes, a family medicine Federally Qualified Health Center and a hospital affiliated obstetrics and gynecology practice and analyzes their process of implementation of integrated outpatient perinatal substance use care. RESULTS: Both spokes found coaching relationships and the sharing of resources such as clinical guidelines useful to begin prescribing buprenorphine for PSUD. Their context led one spoke to begin prescribing within one year while the other took two years. CONCLUSION: Comparing and contrasting these spokes serves to demonstrate that across many contexts, a hub and spoke model is a replicable intervention for rural perinatal substance use access to care barriers. Comparing the two spokes emphasizes the need for adaptation as well as standardization of the model to improve evidence-based PSUD care most effectively.