The impact of the COVID-19 pandemic on people with rheumatic and musculoskeletal diseases: insights from patient-generated data on social media.

OBJECTIVES: During the COVID-19 pandemic, much communication occurred online, through social media. This study aimed to provide patient perspective data on how the COVID-19 pandemic impacted people with rheumatic and musculoskeletal diseases (RMDs), using Twitter-based patient-generated health data (PGHD). METHODS: A convenience sample of Twitter messages in English posted by people with RMDs was extracted between 1 March and 12 July 2020 and examined using thematic analysis. Included were Twitter messages that mentioned keywords and hashtags related to both COVID-19 (or SARS-CoV-2) and select RMDs. The RMDs monitored included inflammatory-driven (joint) conditions (ankylosing spondylitis, RA, PsA, lupus/SLE and gout). RESULTS: The analysis included 569 tweets by 375 Twitter users with RMDs across several countries. Eight themes emerged regarding the impact of the COVID-19 pandemic on people with RMDs: (i) lack of understanding of SARS-CoV-2/COVID-19; (ii) critical changes in health behaviour; (iii) challenges in healthcare practice and communication with healthcare professionals; (iv) difficulties with access to medical care; (v) negative impact on physical and mental health, coping strategies; (vi) issues around work participation; (vii) negative effects of the media; and (viii) awareness-raising. CONCLUSION: The findings show that Twitter serves as a real-time data source to understand the impact of the COVID-19 pandemic on people with RMDs. The platform provided 'early signals' of potentially critical health behaviour changes. Future epidemics might benefit from the real-time use of Twitter-based PGHD to identify emerging health needs, facilitate communication and inform clinical practice decisions.

More Than Just Privacy: Using Contextual Integrity to Evaluate the Long-Term Risks from COVID-19 Surveillance Technologies.

The global coronavirus pandemic has raised important questions regarding how to balance public health concerns with privacy protections for individual citizens. In this essay, we evaluate contact tracing apps, which have been offered as a technological solution to minimize the spread of COVID-19. We argue that apps such as those built on Google and Apple's "exposure notification system" should be evaluated in terms of the contextual integrity of information flows; in other words, the appropriateness of sharing health and location data will be contextually dependent on factors such as who will have access to data, as well as the transmission principles underlying data transfer. We also consider the role of prevailing social and political values in this assessment, including the large-scale social benefits that can be obtained through such information sharing. However, caution should be taken in violating contextual integrity, even in the case of a pandemic, because it risks a long-term loss of autonomy and growing function creep for surveillance and monitoring technologies.