Using social media listening to understand barriers to genomic medicine for those living with Ehlers–Danlos syndromes and hypermobility spectrum disorders

• Published in: Health expectations : an international journal of public participation in health care and health policy 2023-08, Vol.26 (4), p.1524-1535
• Main Authors: Kline, Erika, Garrett, Amanda Leigh, Brownstein, Catherine, Ziniel, Sonja, Payton, Erica, Goldin, Aleah, Hoffman, Kathleen, Chandler, Judy, Weber, Shani
• Format: Article
• Language: English
• Subjects: Authentic experience; Barriers; Caregivers; Community; Connective tissue; Decision making; Digital media; Disease; Disorders; Ecological effects; Ecological models; Ecological studies; Ehlers-Danlos syndrome; Ehlers-Danlos Syndrome - genetics; Ehlers–Danlos syndromes; Genetic testing; Genomic Medicine; Genomics; Health; Health care access; Health care policy; Humans; hypermobility spectrum disorders; Listening; Mass media; Medical research; Medicine; Original; Patients; Personal health; Rare diseases; Social Media; social media listening; Social networks; Verbal communication
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.13755

Introduction Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi‐faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities. Methods Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences. Results/Conclusions Using a modified social–ecological model, this study found that social–structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD. Patient or Public Contribution Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.