Understanding Users Information Needs and Collaborative Sensemaking of Microbiome Data

Understanding Users Information Needs and Collaborative Sensemaking of Microbiome Data
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了解用户信息需求和微生物组数据的协作意义构建

DOI:
10.1145/3274470
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发表时间:
2019
影响因子:
--
通讯作者:
Ball, Mad Price
Ball, Mad Price
中科院分区:
--
文献类型:
--
作者:
Otiono, Jennifer;Olaosebikan, Monsurat;Shaer, Orit;Nov, Oded;Ball, Mad Price

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近年来,通过直接面向消费者的测试套件,非专家获得的个人组学(例如基因组、微生物组)数据的可用性急剧增加。虽然对人类组学信息的科学理解不断发展,但对数据的解释可能会影响用户和相关其他人的福祉,因此为 CSCW 研究带来了挑战和机遇。我们在社会组学的更广泛背景下(数据和解释的共享和协作参与)确定微生物组数据用户的信息、交互和意义构建需求。通过分析 Reddit r/HumanMicrobiome 上的用户讨论,我们确定了用户对微生物组数据的七种需求:查看带注释的报告、比较微生物组数据、跟踪变化、接收个性化的可操作信息、管理和保护信息、记录和共享自我实验以及加强患者和医疗保健提供者之间的沟通。我们重点介绍用户相互交互以协作理解数据的方式。我们以设计含义作为结论,包括用于更好地与护理人员沟通以及以症状为中心的共享和讨论的工具。
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.
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