Reconstructing Intimate Contexts through Data Donation: A Case Study in Menstrual Tracking Technologies

Abstract

Ubiquitous wearable and mobile technologies generate vast amounts of data from sensors and self-logging applications. This data creates opportunities to better understand people's behavior and inform research on intimate topics such as menstruation. However, in design and HCI research, reconstructing the context in which data was collected and understanding the lived experience behind the data often requires the active participation of people. In this paper, we augment the concept of data donation beyond data collection to explore the possibilities of actively engaging data donors in the (intimate) interpretation of their data. Specifically, we define and implement a menstrual logs data donation journey. We received data sets from 35 donors over five weeks, 13 of whom participated in reconstructing the context of their data. We translate our experience into a conceptualization of designerly data donation around the data, data donors, and data receivers, which we discuss along with its implications. CCS CONCEPTS• Human-centered computing → HCI theory, concepts and models.

Personal data store ecosystems in health and social care

“…In many cases, there can be limited direct interaction, or absence thereof, between those donating data and researchers in the data analysis process following an act of data donation ( 34 ). However, people can participate in research in ways beyond their passive involvement as a data subject ( 35 )—for example, as co-designers or as active non-professional researchers as part of citizen science initiatives [e.g., ( 36 )].…”

“…However, people can participate in research in ways beyond their passive involvement as a data subject ( 35 )—for example, as co-designers or as active non-professional researchers as part of citizen science initiatives [e.g., ( 36 )]. Personal data stores may also offer people the opportunity to “bring your own data” [e.g., ( 37 )], as part of their active participation in health and social care research studies [see ( 34 )]—where it would be considered safe, secure and appropriate (e.g., lawful, ethical) to do so. For instance, seeing that personal data represent a fundamental aspect of personal health technologies (e.g., wearable devices, health apps), such participatory data analysis may help to enrich research studies on usability testing of such technologies [e.g., ( 38 )].…”

SIG on Data as Human-Centered Design Material

“…How do prototypes shape the data? Can we rely on alternative ways to access behavioral data (e.g., crowdsourcing [17], data donation [8])? How do these approaches ft and challenge existing data protection regulations and privacy considerations (e.g., the European General Data Protection Regulation [5])?…”

“…For example, looking at her activity tracker, the same participant could say "my daily steps were below my goal for two days when I was sick". In this context, design and HCI researchers support people's engagement with their behavioral data; helping them (1) navigate existing data protection regulations [5,8], (2) categorize and visualize the data and, in doing so, understand it and its implications [13,17], and (3) interpret and situate the data [8,13,18,19].…”