COVID-19 in South Carolina: Experiences Using Facebook as a Self-Organizing Tool for Grassroots Advocacy, Education, and Social Support

This retrospective case study describes our experiences, processes, and lessons learned using social media for pandemic response. Our team created and maintained a large Facebook group, and we used this platform to support grassroots advocacy, public health messaging, and health equity during the COVID-19 pandemic in South Carolina. The Facebook group was initially formed to urge local and state leaders to implement a stay-at-home order, but we recognized a continued need for our virtual space. Group leaders performed tasks including data tracking/reporting and content review/approval. Initial advocacy successes included the stay-at-home order, efforts to limit transmission, and social/mental health support. As the Delta variant emerged, we posted vaccine education and access information and supported school mitigation, including a successful litigation effort that led to a mask requirement on school buses. With the Omicron variant, our group’s focus shifted to educating about immune evasion, transmissibility, and individual protection. This included updates on mask use, antigen testing, vaccine boosters, treatment, data reports, and vaccines. Throughout the pandemic, we addressed health equity, especially for those identifying as disabled. We learned that virtual communities could support each other and improve public health, even when disinformation was present and elected officials emphasized politics over science. [ FROM AUTHOR]

Nailfold capillaroscopy: a survey of current UK practice and ‘next steps’ to facilitate generalised uptake

Background/Aims Nailfold capillaroscopy has a key role in the assessment of patients with Raynaud’s phenomenon (RP) providing a window of opportunity for the early diagnosis of systemic sclerosis (SSc). Anecdotal evidence indicates that this opportunity is not being fully realised across UK rheumatology centres. Reasons for apparent discrepancies in use of capillaroscopy may relate to a lack of expertise, confidence or equipment. Exploratory work has demonstrated the potential for an internet-based standardised system for clinical reporting of nailfold capillaroscopy images to mitigate current inequities in care provision. The overall aim of this study was to understand current practices in the diagnosis of SSc in UK rheumatology centres with specific reference to identifying barriers to the use of nailfold capillaroscopy. A secondary aim was to understand rheumatologists’ views on a standardised system to facilitate the timely diagnosis of SSc. Methods An online survey comprising closed and free-text questions was developed using expert (n = 7) opinion from clinicians, scientists and health service researchers. The survey was piloted (n = 5) and sent to UK-based rheumatologists using established electronic mailing lists between 2nd October 2020 and 8th March 2021. Respondents were asked to describe workloads and practices typically seen before the COVID-19 pandemic. Data were analysed using descriptive statistics and thematic analysis. Results Survey responses were received from 104 rheumatologists representing centres across the UK. Wide variation in terms of workloads and practices were described (See Table 1). Only 41% (n = 43) of respondents reported using nailfold capillaroscopy provided at their centres. Key barriers were access to equipment and a lack of expertise in terms of acquiring and analysing images. Respondents indicated that a centralised internet-based system for storing images and sharing diagnoses would provide access to expertise and the possibility of timely diagnoses. P117 Table 1: Use of nailfold capillaroscopy (NFC) across UK centresNumber (n = 104)%Do you use nailfold capillaroscopy at your site?No6159Yes4341Total104100In what context are nailfold capillaroscopy images taken?At the general clinic appointment2251At a separate hospital appointment1637Other12Either general clinic or separate hospital appointment25Missing/unclear25Is there a dedicated room where imaging is done?No2354Yes1842Unclear/missing25What type of equipment do you use for NFC?Video microscope921Stereomicroscope12USB microscope1228Dermatoscope1330Ophthalmoscope12Stereomicroscope & dermatoscope12Don't know614Who usually does NFC imaging in your centre?I do it myself2047Another consultant or SpR921Nurse/AHP37Technician/medical physics614Medical photography49Clinical scientist12Who usually interprets the NFC imaging in your centre?I do it myself2558Another consultant or SpR819Nurse/AHP25Technician/medical physics512other12Clinical scientist12Technician & consultant/SpR12From how many RP patients do you obtain NFC images?0381 to 5386 to 1092311 to 2061521 to 30410more than 30923Not sure513How many of those patients imaged were diagnosed with SSc?04101 to 516416 to 1082111 to 203821 to 3025more than 3025Not sure410How are results of NFC reported to the patients?Face-to-face at imaging session1126Face-to-face at clinic appointment1433Letter / as part of treatment plan1330No specific nailfold capillaroscopy reporting25Other25Letter / face-to-face12Do you (also) refer patients to other centres for NFC?No6260Yes4240How many patients per year do you refer to other centres?1 to 526636 to 10112711 to 201221 to 3025more than 3012 *participants asked to base answers on the situation in 2019 before the COVID-19 pandemic Conclusion Substantial variation in approaches to the diagnosis of SSc across the UK was identified. Potential benefits of a standardised system were described by respondents including the improved diagnosis and management of SSc, realising potential patient benefits and reducing current health inequalities. Survey findings provide evidence to help develop future studies to develop and evaluate the proposed new system. Disclosure M. Eden: None. S. Wilkinson: None. A. Murray: None. P. Gurunath Bharathi: None. C. Taylor: None. K. Payne: None. A.L. Herrick: None.

Understanding and responding to COVID-19 in Wales: protocol for a privacy-protecting data platform for enhanced epidemiology and evaluation of interventions.

INTRODUCTION: The emergence of the novel respiratory SARS-CoV-2 and subsequent COVID-19 pandemic have required rapid assimilation of population-level data to understand and control the spread of infection in the general and vulnerable populations. Rapid analyses are needed to inform policy development and target interventions to at-risk groups to prevent serious health outcomes. We aim to provide an accessible research platform to determine demographic, socioeconomic and clinical risk factors for infection, morbidity and mortality of COVID-19, to measure the impact of COVID-19 on healthcare utilisation and long-term health, and to enable the evaluation of natural experiments of policy interventions. METHODS AND ANALYSIS: Two privacy-protecting population-level cohorts have been created and derived from multisourced demographic and healthcare data. The C20 cohort consists of 3.2 million people in Wales on the 1 January 2020 with follow-up until 31 May 2020. The complete cohort dataset will be updated monthly with some individual datasets available daily. The C16 cohort consists of 3 million people in Wales on the 1 January 2016 with follow-up to 31 December 2019. C16 is designed as a counterfactual cohort to provide contextual comparative population data on disease, health service utilisation and mortality. Study outcomes will: (a) characterise the epidemiology of COVID-19, (b) assess socioeconomic and demographic influences on infection and outcomes, (c) measure the impact of COVID-19 on short -term and longer-term population outcomes and (d) undertake studies on the transmission and spatial spread of infection. ETHICS AND DISSEMINATION: The Secure Anonymised Information Linkage-independent Information Governance Review Panel has approved this study. The study findings will be presented to policy groups, public meetings, national and international conferences, and published in peer-reviewed journals.