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

BACKGROUND: Patient 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. OBJECTIVE: This 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. METHODS: This 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. RESULTS: The 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. CONCLUSIONS: Social 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.

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.

Opportunities to expand access to mental health services: A case for the role of online peer support communities.

This study investigated whether with disruptions in care due to the COVID-19 pandemic, persons who self-identified as living with a mental health condition increased their usage of an online peer support community. We also explored whether study participants who self-reported usage of online peer support communities were interested in using these communities to connect with evidence-based interventions and mental health services. This study employed a cross-sectional online survey design. The survey was disseminated by the Inspire online peer support community and Mental Health America through various social media channels. Descriptive and inferential analyses were conducted to summarize participant demographics, investigate patterns of use of online peer support communities, and interest in accessing additional programs through these platforms. There were 369 survey respondents, with a mean age of 49 (SD = 15.6), of which 77% were female. Most respondents self-reported having depression (34%), post-traumatic stress disorder (25%), and anxiety-related conditions (20%). The number of respondents who reported accessing online peer support platforms multiple times a day appeared to double after March 2020. We also found an overall positive association between frequency of community use and self-reported benefit to mental health. Approximately 81% of respondents expressed interest in accessing mental health services via an online peer support community. Persons who self-report living with mental health conditions and who engage in online peer support communities expressed interest in accessing evidence-based interventions via these online platforms. Participants were most interested in services related to enhancing coping mechanisms and skills, enabling overall wellbeing, and accessing therapy.

Political ideology and American intergroup discrimination: A patriotism perspective.

In this research we demonstrate the powerful role of ingroup favoritism, rather than hostility, in American intergroup biases. Specifically, we take a novel perspective to understanding the relationship between political ideology and discrimination against ethnic-minority Americans by focusing on the role of patriotism. Across three studies, we show that political ideology is a strong predictor of resource allocation biases, and this effect is mediated by American patriotism and not by prejudice or nationalism. Conservatives report greater levels of patriotism than liberals, and patriotism is associated with donating more to American, as opposed to ethnic-minority American, organizations. We further show that the link between patriotism and partiality to the national group is mediated by stronger "American = White" associations. These findings have important implications for intergroup relations and diversity-related policy issues in the United States.

Estimating large numbers.

Despite their importance in public discourse, numbers in the range of 1 million to 1 trillion are notoriously difficult to understand. We examine magnitude estimation by adult Americans when placing large numbers on a number line and when qualitatively evaluating descriptions of imaginary geopolitical scenarios. Prior theoretical conceptions predict a log-to-linear shift: People will either place numbers linearly or will place numbers according to a compressive logarithmic or power-shaped function (Barth & Paladino, ; Siegler & Opfer, ). While about half of people did estimate numbers linearly over this range, nearly all the remaining participants placed 1 million approximately halfway between 1 thousand and 1 billion, but placed numbers linearly across each half, as though they believed that the number words "thousand, million, billion, trillion" constitute a uniformly spaced count list. Participants in this group also tended to be optimistic in evaluations of largely ineffective political strategies, relative to linear number-line placers. The results indicate that the surface structure of number words can heavily influence processes for dealing with numbers in this range, and it can amplify the possibility that analogous surface regularities are partially responsible for parallel phenomena in children. In addition, these results have direct implications for lawmakers and scientists hoping to communicate effectively with the public.