让研究参与者参与自我记录的月经健康数据的机会和风险

Samantha Robertson, K. Harley, Niloufar Salehi
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引用次数: 0

摘要

许多人使用健康跟踪应用程序来跟踪自己的月经周期,通常是希望更好地了解自己的健康状况,并能够识别出什么时候可能出现了问题。然而,单独解释这些数据是非常困难的。与此同时,研究人员越来越普遍地使用这些应用程序的数据来了解更多关于月经健康的信息。在这项工作中,我们提出,如何使更多的参与性方法来进行月经健康研究,使参与者和研究人员都受益?我们确定了这种参与的主要挑战和风险,并提出了四项设计准则,用于让参与者参与大规模、定量的月经健康研究的“人在循环”数据分析工具:对数据清理和分析程序进行表面处理并获得反馈;传达与其他用户相关的信息和临床指导;结构接合以确保有效的分析;支持社会参与和学习。对于其中的每一个,我们都强调了与HILDA和可视化研究社区相关的关键开放研究问题。我们计划通过与用户、研究人员和医疗保健提供者的设计研讨会来评估和迭代这些指导方针。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Opportunities and risks for engaging research participants with self-logged menstrual health data
Many people use health tracking apps to keep track of their menstrual cycles, often in the hopes of better understanding their own health, and being able to identify when something might be wrong. However, it can be very difficult to interpret this data alone. Meanwhile, it is becoming increasingly common for researchers to use data from these apps to learn more about menstrual health. In this work we ask, how could more participatory approaches to conducting menstrual health research benefit both participants and researchers? We identify key challenges and risks of this kind of engagement, and propose four design guidelines for human-in-the-loop data analysis tools that engage participants with large-scale, quantitative menstrual health research: surface and elicit feedback on the data cleaning and analysis procedure; convey information relative to other users and clinical guidance; structure engagement to ensure valid analyses; and support social engagement and learning. For each of these, we highlight key open research questions relevant to the HILDA and visualization research communities. We plan to for evaluate and iterate on these guidelines through design workshops with users, researchers, and healthcare providers.
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