Understanding users information needs and collaborative sensemaking of microbiome data

Recent years are seeing a sharp increase in the availability of personal omic (e.g. genomes, microbiomes) data to non-experts through direct-to-consumer testing kits. While the scientific understanding of human -omic information is evolving, the interpretation of the data may impact well-being of users and relevant others, and therefore poses challenges and opportunities for CSCW research. We identify the information, interaction, and sense-making needs of microbiomic data users, within the broader context of social omics - the sharing and collaborative engagement with data and interpretation. Analyzing users’ discussions on Reddit’s r/HumanMicrobiome, we identified seven user needs for microbiome data: reviewing an annotated report, comparing microbiome data, tracking changes, receiving personalized actionable information, curating and securing information, documenting and sharing self experiments, and enhancing the communication between patients and health-care providers. We highlight the ways in which users interact with each other to collaboratively make sense of the data. We conclude with design implications, including tools for better communication with care providers, and for symptom-centered sharing and discussion.