Exploring Chronic Pain and Pain Management Perspectives: Qualitative Pilot Analysis of Web-Based Health Community Posts

BackgroundPatient perspectives are central to the US Food and Drug Administration’s benefit-risk decision-making process in the evaluation of medical products. Traditional channels of communication may not be feasible for all patients and consumers. Social media websites have increasingly been recognized by researchers as a means to gain insights into patients’ views about treatment and diagnostic options, the health care system, and their experiences living with their conditions. Consideration of multiple patient perspective data sources offers the Food and Drug Administration the opportunity to capture diverse patient voices and experiences with chronic pain. ObjectiveThis pilot study explores posts from a web-based patient platform to gain insights into the key challenges and barriers to treatment faced by patients with chronic pain and their caregivers. MethodsThis research compiles and analyzes unstructured patient data to draw out the key themes. To extract relevant posts for this study, predefined keywords were identified. Harvested posts were published between January 1, 2017, and October 22, 2019, and had to include #ChronicPain and at least one other relevant disease tag, a relevant chronic pain management tag, or a chronic pain management tag for a treatment or activity specific to chronic pain. ResultsThe most common topics discussed among persons living with chronic pain were related to disease burden, the need for support, advocacy, and proper diagnosis. Patients’ discussions focused on the negative impact chronic pain had on their emotions, playing sports, or exercising, work and school, sleep, social life, and other activities of daily life. The 2 most frequently discussed treatments were opioids or narcotics and devices such as transcutaneous electrical nerve stimulation machines and spinal cord stimulators. ConclusionsSocial listening data may provide valuable insights into patients’ and caregivers’ perspectives, preferences, and unmet needs, especially when conditions may be highly stigmatized

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

Abstract 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

Gestión Invisible: Manejo de Recursos Naturales en dos Comunidades Indígenas Peruanas

El 5 de junio de 2009, unas treinta personas murieron en Bagua, Perú en un enfrentamiento entre las autoridades gubernamentales y los pueblos indígenas. El evento denominado el Baguazo , destaca el papel marginalizado de los indígenas amazónicos cuando se enfrentan a los intereses comerciales multinacionales respaldados por el Estado (Shepard, 2009). Los pueblos indígenas estaban protestando la Ley de la Selva , el Decreto 1090, un decreto de 2009 asumiendo las tierras indígenas boscosas como improductivas, y que proporciona la base legal para privatizar los bosques comunales para facilitar la extracción de petróleo, los proyectos de biocombustibles, los proyectos hidroeléctricos y la agricultura comercial. Desde 1492, el idea de un manejo de recursos naturales improductivo de parte de la raza indígena ha ayudado de avanzar la colonización, la deforestación y el desplazamiento de los habitantes indígenas. Esta investigación utiliza receptores GPS y un Sistema de Información Geográfica (SIG) para proporcionar una muestra de la gestión de los recursos naturales indígenas, no sólo en sus campos agrícolas fácilmente visibles, sino también bajo la cobertura de los bosques y a lo largo de los lagos y cursos fluviales.https://scholarship.richmond.edu/geography-posters/1003/thumbnail.jp