Understanding the Use of Mobility Data in Disasters: Exploratory Qualitative Study of COVID-19 User Feedback.

BACKGROUND: Human mobility data have been used as a potential novel data source to guide policies and response planning during the COVID-19 global pandemic. The COVID-19 Mobility Data Network (CMDN) facilitated the use of human mobility data around the world. Both researchers and policy makers assumed that mobility data would provide insights to help policy makers and response planners. However, evidence that human mobility data were operationally useful and provided added value for public health response planners remains largely unknown. OBJECTIVE: This exploratory study focuses on advancing the understanding of the use of human mobility data during the early phase of the COVID-19 pandemic. The study explored how researchers and practitioners around the world used these data in response planning and policy making, focusing on processing data and human factors enabling or hindering use of the data. METHODS: Our project was based on phenomenology and used an inductive approach to thematic analysis. Transcripts were open-coded to create the codebook that was then applied by 2 team members who blind-coded all transcripts. Consensus coding was used for coding discrepancies. RESULTS: Interviews were conducted with 45 individuals during the early period of the COVID-19 pandemic. Although some teams used mobility data for response planning, few were able to describe their uses in policy making, and there were no standardized ways that teams used mobility data. Mobility data played a larger role in providing situational awareness for government partners, helping to understand where people were moving in relation to the spread of COVID-19 variants and reactions to stay-at-home orders. Interviewees who felt they were more successful using mobility data often cited an individual who was able to answer general questions about mobility data; provide interactive feedback on results; and enable a 2-way communication exchange about data, meaning, value, and potential use. CONCLUSIONS: Human mobility data were used as a novel data source in the COVID-19 pandemic by a network of academic researchers and practitioners using privacy-preserving and anonymized mobility data. This study reflects the processes in analyzing and communicating human mobility data, as well as how these data were used in response planning and how the data were intended for use in policy making. The study reveals several valuable use cases. Ultimately, the role of a data translator was crucial in understanding the complexities of this novel data source. With this role, teams were able to adapt workflows, visualizations, and reports to align with end users and decision makers while communicating this information meaningfully to address the goals of responders and policy makers.

Real-world experience with colorectal cancer chemotherapies: patient web forum analysis.

BACKGROUND: In contrast to clinical trials, patient web forums provide a unique opportunity for patients to spontaneously post their experiences and thoughts about diseases and treatments. This study explored the impact of colorectal cancer (CRC) treatments in these forums. METHODS: This was a systematic cross-sectional qualitative analysis. Two active CRC web forums were identified based on four criteria: active for ≥five years, >12,000 total posts, >20 individuals currently browsing, and ≥10 new posts/day. All relevant threads (set of messages focusing on a topic) relating to treatment posted in July and December 2010 and February to March 2011 were reviewed and coded using MaxQDA software. A content analysis was performed identifying key themes. RESULTS: The threads included 1522 posts by 264 individuals. Demographics were identified for 83% of the posters. Of these, 83% were CRC patients and 17% were family members; 76% were females, and the mean patient age was 49 years. The majority had advanced cancer (44% stage IV or metastatic, 40% stage III). The most common themes were side effects (62.3% of posts), treatment response (13%), and impact on personal, social, and work lives, and emotional distress (23.9%). The posters came to the online forums to have an emotional outlet, share experience, and seek advice. The emotional impacts primarily exemplified resilience and positive coping strategies. Formal knowledge regarding the likelihood of treatment response, magnitude of benefit, or side effects was lacking, which lead to uncertainty and anxiety. However, patients expressed appreciation for the availability of treatment options and the hope they provide. CONCLUSION: Online CRC communities provide patients with convenient and valuable emotional support and disease information. CRC and treatments may have profound impacts beyond efficacy and toxicity. Systematic information and decision tools may help to minimise uncertainties and help patients manage expectations and emotional distress.