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

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.     

Health promotion in the city: A structured review of the literature on interventions to prevent heart disease, substance abuse, violence and HIV infection in us metropolitan areas, 1980–1995

To achieve its national public health goals, the US must improve the health of low-income urban populations. To contribute to this process, this study reviewed published reports of health promotion interventions designed to prevent heart disease, HIV infection, substance abuse, and violence in US cities. The study's objectives were to describe the target populations, settings, and program characteristics of these interventions and to assess the extent to which these programs followed accepted principles for health promotion. Investigators searched five computerized databases and references of selected articles for articles published in peer-reviewed journals between 1980 and 1995. Selected articles listed as a main goal primary prevention of one of four index conditions; were carried out within a US city; included sufficient information to characterize the intervention; and organized at least 25% of its activities within a community setting. In general, programs reached a diverse population of low-income city residents in a variety of settings, employed multiple strategies, and recognized at least some of the principles of effective health promotion. Most programs reported a systematic evaluation. However, many programs did not involve participants in planning, intervene to change underlying social causes, last more than a year, or tailor for the subpopulations they targeted, limiting their potential effectiveness. Few programs addressed the unique characteristics of urban communities. Mr. Lancaster is with the Division of Adult and Community Health, National Center for Health Promotion and Disease Prevention, and Dr. Speers is with the Office of the Associate Director for Science, US Centers for Disease Control and Prevention. The research described in this report was supported by the US Centers for Disease Control and Prevention. All views expressed are those of the authors and do not necessarily reflect the views of their institution.