research-article

Open access

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

Authors:

Alejandra Gomez Ortega,

Jacky Bourgeois,

Gerd KortuemAuthors Info & Claims

NordiCHI '22: Nordic Human-Computer Interaction Conference

Article No.: 8, Pages 1 - 12

https://doi.org/10.1145/3546155.3546646

Published: 08 October 2022 Publication History

All formats PDF

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.

References

[1]

Algorithm Watch. 2021. DataSkop: Investigating YouTube’s algorithm during Germany’s election campaign. https://algorithmwatch.org/en/dataskop-investigating-youtubes-algorithm-during-germanys-election-campaign/

[2]

Teresa Almeida, Rob Comber, and Madeline Balaam. 2016. HCI and intimate care as an agenda for change in women’s health. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery (ACM), San Jose, CA, USA, 2599–2611. https://doi.org/10.1145/2858036.2858187

Digital Library

[3]

Teresa Almeida, Rob Comber, Gavin Wood, Dean Saraf, and Madeline Balaam. 2016. On looking at the vagina through Labella. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery (ACM), San Jose, CA, USA, 1810–1821. https://doi.org/10.1145/2858036.2858119

Digital Library

[4]

Apple App Store. 2021. Search Result for ’Period Tracker’ on Apple App Store. https://www.apple.com/nl/search/Period-Tracker?src=globalnav

[5]

Madeline Balaam, Rob Comber, Ed Jenkins, Selina Sutton, and Andrew Garbett. 2015. Feedfinder: A location-mapping mobile application for breastfeeding women. Conference on Human Factors in Computing Systems - Proceedings 2015-April (2015), 1709–1718. https://doi.org/10.1145/2702123.2702328

Digital Library

[6]

Matthew Bietz, Kevin Patrick, and Cinnamon Bloss. 2019. Data Donation as a Model for Citizen Science Health Research. Citizen Science: Theory and Practice 4, 1 (2019), 1–11. https://doi.org/10.5334/cstp.178

[7]

Sander Bogers, Joep Frens, Janne Van Kollenburg, Eva Deckers, and Caroline Hummels. 2016. Connected baby bottle: A design case study towards a framework for data-enabled design. In DIS 2016 - Proceedings of the 2016 ACM Conference on Designing Interactive Systems: Fuse. Association for Computing Machinery, Inc, New York, NY, USA, 301–311. https://doi.org/10.1145/2901790.2901855

Digital Library

[8]

Tobias Bornakke and Brian L. Due. 2018. Big–Thick Blending: A method for mixing analytical insights from big and thick data sources. Big Data and Society 5, 1 (2018), 1–16. https://doi.org/10.1177/2053951718765026

[9]

Jacky Bourgeois, Stefan Foell, Gerd Kortuem, Blaine A. Price, Janet Van Der Linden, Eiman Y. Elbanhawy, and Christopher Rimmer. 2015. Harvesting green miles from my roof: An investigation into self-sufficient mobility with electric vehicles. In UbiComp 2015 - Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing. Association for Computing Machinery (ACM), Osaka, Japan, 1065–1076. https://doi.org/10.1145/2750858.2807546

Digital Library

[10]

Jacky Bourgeois and Gerd Kortuem. 2019. Towards responsible design with internet of things data. Proceedings of the International Conference on Engineering Design, ICED 2019-Augus, AUGUST (2019), 3421–3430. https://doi.org/10.1017/dsi.2019.349

[11]

Jacky Bourgeois, Gerd Kortuem, and Fahim Kawsar. 2018. Trusted and GDPR-compliant research with the internet of things. In ACM International Conference Proceeding Series. Association for Computing Machinery, New York, NY, USA, 1–8. https://doi.org/10.1145/3277593.3277604

Digital Library

[12]

Jacky Bourgeois, Janet Van Der Linden, Gerd Kortuem, Blaine A. Price, and Christopher Rimmer. 2014. Conversations with my washing machine: An in-the-wild study of demand shifting with self-generated energy. In UbiComp 2014 - Proceedings of the 2014 ACM International Joint Conference on Pervasive and Ubiquitous Computing. Association for Computing Machinery, New York, NY, USA, 459–470. https://doi.org/10.1145/2632048.2632106

Digital Library

[13]

J. Bourgeois, J. Van Der Linden, G. Kortuem, B. A. Price, and C. Rimmer. 2014. Using participatory data analysis to understand social constraints and opportunities of electricity demand-shifting. In ICT for Sustainability 2014, ICT4S 2014. Atlantis Press, Stockholm, Sweden, 392–401. https://doi.org/10.2991/ict4s-14.2014.49

[14]

Virginia Braun and Victoria Clarke. 2006. Qualitative Research in Psychology Using thematic analysis in psychology Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2 (2006), 77–101. http://www.tandfonline.com/action/journalInformation?journalCode=uqrp20%5Cnhttp://www.tandfonline.com/action/journalInformation?journalCode=uqrp20

[15]

Virginia Braun and Victoria Clarke. 2013. Successful Qualitative Research. A Practical Guide for Beginners. SAGE Publications Ltd, London. 400 pages.

[16]

Nadia Campo Woytuk, Marie Louise Juul Søndergaard, Marianela Ciolfi Felice, and Madeline Balaam. 2020. Touching and Being in Touch with the Menstruating Body. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery (ACM), Honolulu, HI, USA, 1–14. https://doi.org/10.1145/3313831.3376471

Digital Library

[17]

Shaan Chopra, Rachael Zehrung, and Tamil A. Shanmugam. 2021. Living with uncertainty and stigma: Self-experimentation and support-seeking around polycystic ovary syndrome. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery (ACM), Yokohama, Japan. https://doi.org/10.1145/3411764.3445706

Digital Library

[18]

Clue by Biowink. 2021. Clue: The app to track your period, and so much more. https://helloclue.com/period-tracker-app

[19]

Andy Crabtree and Richard Mortier. 2015. Human Data Interaction: Historical Lessons from Social Studies and CSCW. In ECSCW 2015: Proceedings of the 14th European Conference on Computer Supported Cooperative Work, Nina Boulus-Rodje, Gunnar Ellignsen, Tone Bratteteig, Margunn Aanestad, and Pernille Bjorn (Eds.). Springer International Publishing, Oslo, Norway, 19–23. https://doi.org/10.1007/978-3-319-20499-4

[20]

Daniel Diethei and Jasmin Niess. 2021. Sharing heartbeats: Motivations of citizen scientists in times of crises. Conference on Human Factors in Computing Systems - Proceedings 2020, April(2021), 15. https://doi.org/10.1145/3411764.3445665

Digital Library

[21]

Catherine D’Ignazio and Lauren F. Klein. 2020. Data Feminism. MIT Press. 328 pages. https://doi.org/10.7551/mitpress/11805.001.0001

[22]

Daniel A. Epstein, Nicole B. Lee, Jennifer H. Kang, Elena Agapie, Jessica Schroeder, Laura R. Pina, James Fogarty, Julie A. Kientz, and Sean A. Munson. 2017. Examining menstrual tracking to inform the design of personal informatics tools. In Conference on Human Factors in Computing Systems - Proceedings, Vol. 2017-May. Association for Computing Machinery, Denver, Colorado, USA, 6876–6888. https://doi.org/10.1145/3025453.3025635

Digital Library

[23]

Flo Health. 2021. About Flo. https://flo.health/about-flohttps://flo.health/about-flo

[24]

Luciano Floridi. 2014. Open Data, Data Protection, and Group Privacy. Philosophy and Technology 27, 1 (2014), 1–3. https://doi.org/10.1007/s13347-014-0157-8

[25]

Sarah Fox, Noura Howell, Richmond Wong, and Franchesca Spektor. 2019. Vivewell: Speculating near-future menstrual tracking through current data practices. In DIS 2019 - Proceedings of the 2019 ACM Designing Interactive Systems Conference. Association for Computing Machinery (ACM), San Diego, CA, USA, 541–552. https://doi.org/10.1145/3322276.3323695

Digital Library

[26]

Batya Friedman and Peter H Kahn. 2002. Human Values, Ethics, and Design. In The Human-Computer Interaction Handbook: Fundamentals, Evolving Technologies and Emerging Applications. L. Erlbaum Associates Inc., 1177–1201.

[27]

Alejandra Gomez Ortega, Jacky Bourgeois, and Gerd Kortuem. 2021. Towards Designerly Data Donation. In UbiComp/ISWC 2021 - Adjunct Proceedings of the 2021 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2021 ACM International Symposium on Wearable Computers. Association for Computing Machinery (ACM), Virtual, 496–501. https://doi.org/10.1145/3460418.3479362

Digital Library

[28]

Elizabeth Goodman. 2014. Design and ethics in the era of big data. Interactions 21, 3 (2014), 22–24. https://doi.org/10.1145/2598902

Digital Library

[29]

Google Play. 2021. Search Result for ’Period Tracker’ on Google Play. https://play.google.com/store/apps/collection/cluster?clp=ggEQCg5QZXJpb2QgVHJhY2tlcg%3D%3D:S:ANO1ljK-sJY&gsr=ChOCARAKDlBlcmlvZCBUcmFja2Vy:S:ANO1ljJYGCU

[30]

Katerina Gorkovenko, Daniel J Burnett, James Thorp, Daniel Richards, and Dave Murray-Rust. 2019. Supporting Real-Time Contextual Inquiry Through Sensor Data Supporting Real-Time Contextual Inquiry Through Sensor Data. In Ethnographic Praxis in Industry Conference Proceedings. Edinburgh, UK, 1–29.

[31]

Katerina Gorkovenko, Daniel J Burnett, James K Thorp, Daniel Richards, and Dave Murray-Rust. 2020. Exploring the Future of Data-Driven Product Design. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery, New York, NY, USA, 1–14. https://doi.org/10.1145/3313831.3376560

Digital Library

[32]

Karey Helms. 2019. Do you have to pee? A design space for intimate and somatic data. In DIS 2019 - Proceedings of the 2019 ACM Designing Interactive Systems Conference. Association for Computing Machinery (ACM), San Diego, CA, USA, 1209–1222. https://doi.org/10.1145/3322276.3322290

Digital Library

[33]

Sarah Homewood. 2018. Designing for the changing body: A feminist exploration of self-tracking technologies. Conference on Human Factors in Computing Systems - Proceedings 2018-April (2018), 1–4. https://doi.org/10.1145/3170427.3173031

Digital Library

[34]

Patrik Hummel, Matthias Braun, and Peter Dabrock. 2019. Data Donations as Exercises of Sovereignty. Vol. 137. Springer International Publishing, Cham. 23–54 pages. https://doi.org/10.1007/978-3-030-04363-6_3

[35]

Julius Center. 2021. About COVID-RED. https://www.covid-red.eu/en/

[36]

Gerd Kortuem, Jacky Bourgeois, Janet Van Der Linden, and Blaine Price. 2014. Participatory data analysis: A new method for investigating human energy practices. CEUR Workshop Proceedings 1203 (2014), 32–34.

[37]

Jenny Krutzinna, Mariarosaria Taddeo, and Luciano Floridi. 2019. An Ethical Code for Posthumous Medical Data Donation. Philosophical Studies Series 137 (2019), 181–195. https://doi.org/10.1007/978-3-030-04363-6_12

[38]

Hyosun Kwon, Joel Fischer, Martin Flintham, and James Colley. 2018. The Connected Shower: Studying Intimate Data in Everyday Life. Proceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies 2, 4 (2018), 1–22. https://doi.org/10.1145/3287054

Digital Library

[39]

Jiahao Lu, Alejandra Gomez Ortega, Milene Gonçalves, and Jacky Bourgeois. 2021. the Impact of Data on the Role of Designers and Their Process. Proceedings of the Design Society 1, August (2021), 3021–3030. https://doi.org/10.1017/pds.2021.563

[40]

Maryam Mehrnezhad and Teresa Almeida. 2021. Caring for intimate data in fertility technologies. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery (ACM), Yokohama, Japan, 11. https://doi.org/10.1145/3411764.3445132

Digital Library

[41]

Richard Mortier, Hamed Haddadi, Tristan Henderson, Derek McAuley, and Jon Crowcroft. 2014. Human-Data Interaction: The Human Face of the Data-Driven Society. SSRN Electronic Journal 10 (2014), 1–11. https://doi.org/10.2139/ssrn.2508051

[42]

Jakob Ohme, Theo Araujo, Claes H. de Vreese, and Jessica Taylor Piotrowski. 2021. Mobile data donations: Assessing self-report accuracy and sample biases with the iOS Screen Time function. Mobile Media and Communication 9, 2 (2021), 293–313. https://doi.org/10.1177/2050157920959106

[43]

Dominik Pins, Timo Jakobi, Alexander Boden, Fatemeh Alizadeh, and Volker Wulf. 2021. Alexa, We Need to Talk: A Data Literacy Approach on Voice Assistants. In DIS 2021 - Proceedings of the 2021 ACM Designing Interactive Systems Conference: Nowhere and Everywhere. ACM, New York, NY, USA, 495–507. https://doi.org/10.1145/3461778.3462001

Digital Library

[44]

Barbara Prainsack. 2019. Data Donation: How to Resist the iLeviathan. Philosophical Studies Series 137 (2019), 9–22. https://doi.org/10.1007/978-3-030-04363-6_2

[45]

Barbara Prainsack. 2019. Logged out: Ownership, exclusion and public value in the digital data and information commons. Big Data and Society 6, 1 (2019), 1–15. https://doi.org/10.1177/2053951719829773

[46]

Robert Koch Institut. 2020. Corona-Datenspende. https://corona-datenspende.de/science/en/

[47]

E Sanders and PJ Stappers. 2008. Co-creation and the new landscapes of design. CoDesign 4, 1 (2008), 5–18. https://doi.org/10.1080/15710880701875068

[48]

Anya Skatova and James Goulding. 2019. Psychology of personal data donation. PLoS ONE 14, 11 (2019), 1–20. https://doi.org/10.1371/journal.pone.0224240

[49]

Anya Skatova, Esther Ng, and James Goulding. 2014. Data Donation: Sharing Personal Data for Public Good?. In Digital Economy All Hands Meeting. 1–3. https://doi.org/10.13140/2.1.2567.8405

[50]

Marie Louise Juul Sondergaard, Marianela Ciolf Felice, and Madeline Balaam. 2021. Designing menstrual technologies with adolescents. In Conference on Human Factors in Computing Systems - Proceedings. Association for Computing Machinery (ACM), Yokohama, Japan, 14. https://doi.org/10.1145/3411764.3445471

Digital Library

[51]

Mariarosaria Taddeo and Luciano Floridi. 2016. What is Data Ethics ? Subject Areas : Author for correspondence :. Philosophical transactions. Series A 374(2083):, Dec 28(2016), 1–5.

[52]

Peter Tolmie, Andy Crabtree, Tom Rodden, James A Colley, and Ewa A Luger. 2016. “This has to be the cats” - Personal Data Legibility in Networked Sensing Systems. In Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing - CSCW ’16(CSCW ’16). ACM, New York, NY, USA, 490–501. https://doi.org/10.1145/2818048.2819992

Digital Library

[53]

Matteo Turilli and Luciano Floridi. 2009. The ethics of information transparency. Ethics and Information Technology 11, 2 (2009), 105–112. https://doi.org/10.1007/s10676-009-9187-9

[54]

Janne van Kollenburg and Sander Bogers. 2019. Data-enabled design : a situated design approach that uses data as creative material when designing for intelligent ecosystems. Technical Report 2019. Eindhoven University of Technology, Eindhoven, The Netherlands. https://research.tue.nl/en/publications/data-enabled-design-a-situated-design-approach-that-uses-data-as-

[55]

John Wilbanks and Stephen H. Friend. 2016. First, design for data sharing. Nature Biotechnology 34, 4 (2016), 377–379. https://doi.org/10.1038/nbt.3516

Cited By

Datey IZytko D(2024)"Just Like, Risking Your Life Here": Participatory Design of User Interactions with Risk Detection AI to Prevent Online-to-Offline Harm Through Dating AppsProceedings of the ACM on Human-Computer Interaction10.1145/36869068:CSCW2(1-41)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686906
Kaygan HGenç ÇBuruk OJørgensen IGabrielaitis L(2024)The Deep Body: Exploring users' insides through design fictionProceedings of the 27th International Academic Mindtrek Conference10.1145/3681716.3681743(325-329)Online publication date: 8-Oct-2024
https://dl.acm.org/doi/10.1145/3681716.3681743
Gómez Ortega ABourgeois JKortuem G(2024)Sensitive Data Donation: A Feminist Reframing of Data Practices for Intimate Research ContextsProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661524(2420-2434)Online publication date: 1-Jul-2024
https://dl.acm.org/doi/10.1145/3643834.3661524
Show More Cited By

Recommendations

Rethinking Menstrual Trackers Towards Period-Positive Ecologies
CHI '22: Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems

Menstrual tracking is a mechanism widely engaged towards preserving menstrual dignity, as natural birth control, for ensuring adequate preparation for an upcoming cycle, among other motivations. We investigate the design of digital menstrual trackers ...
Towards Designerly Data Donation
UbiComp/ISWC '21 Adjunct: Adjunct Proceedings of the 2021 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2021 ACM International Symposium on Wearable Computers

In-the-wild research allows the HCI community to gain insights into personal behaviour and characteristics. For designers and researchers, this means having access to rich spatiotemporal insights reflecting user’s characteristics, behaviours, and ...
Examining Menstrual Tracking to Inform the Design of Personal Informatics Tools
CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems

We consider why and how women track their menstrual cycles, examining their experiences to uncover design opportunities and extend the field's understanding of personal informatics tools. To understand menstrual cycle tracking practices, we collected ...

Comments

Information & Contributors

Information

Published In

cover image ACM Other conferences

NordiCHI '22: Nordic Human-Computer Interaction Conference

October 2022

1091 pages

ISBN:9781450396998

DOI:10.1145/3546155

Copyright © 2022 Owner/Author.

This work is licensed under a Creative Commons Attribution International 4.0 License.

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 08 October 2022

Check for updates

Author Tags

Qualifiers

Research-article
Research
Refereed limited

Conference

NordiCHI '22

NordiCHI '22: Nordic Human-Computer Interaction Conference

October 8 - 12, 2022

Aarhus, Denmark

Acceptance Rates

Overall Acceptance Rate 379 of 1,572 submissions, 24%

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

9
Total Citations
View Citations
1,147
Total Downloads

Downloads (Last 12 months)442
Downloads (Last 6 weeks)39

Reflects downloads up to 17 Feb 2025

Other Metrics

View Author Metrics

Citations

Cited By

Datey IZytko D(2024)"Just Like, Risking Your Life Here": Participatory Design of User Interactions with Risk Detection AI to Prevent Online-to-Offline Harm Through Dating AppsProceedings of the ACM on Human-Computer Interaction10.1145/36869068:CSCW2(1-41)Online publication date: 8-Nov-2024
https://dl.acm.org/doi/10.1145/3686906
Kaygan HGenç ÇBuruk OJørgensen IGabrielaitis L(2024)The Deep Body: Exploring users' insides through design fictionProceedings of the 27th International Academic Mindtrek Conference10.1145/3681716.3681743(325-329)Online publication date: 8-Oct-2024
https://dl.acm.org/doi/10.1145/3681716.3681743
Gómez Ortega ABourgeois JKortuem G(2024)Sensitive Data Donation: A Feminist Reframing of Data Practices for Intimate Research ContextsProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661524(2420-2434)Online publication date: 1-Jul-2024
https://dl.acm.org/doi/10.1145/3643834.3661524
Gómez Ortega ABourgeois JKortuem G(2024)Participation in Data Donation: Co-Creative, Collaborative, and Contributory Engagements with Athletes and their Intimate DataProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661503(2388-2402)Online publication date: 1-Jul-2024
https://dl.acm.org/doi/10.1145/3643834.3661503
Zheng WWalquist EDatey IZhou XBerishaj KMcdonald MParkhill MZhu DZytko D(2024)“It’s Not What We Were Trying to Get At, but I Think Maybe It Should Be”: Learning How to Do Trauma-Informed Design with a Data Donation Platform for Online Dating Sexual ViolenceProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642045(1-15)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642045
Gómez Ortega ABourgeois JKortuem G(2023)Personal Data Comics: A Data Storytelling Approach Supporting Personal Data LiteracyProceedings of the XI Latin American Conference on Human Computer Interaction10.1145/3630970.3630982(1-8)Online publication date: 30-Oct-2023
https://dl.acm.org/doi/10.1145/3630970.3630982
Zheng WWalquist EDatey IZhou XBerishaj KMcdonald MParkhill MZhu DZytko D(2023)Towards Trauma-Informed Data Donation of Sexual Experience in Online Dating to Improve Sexual Risk Detection AIAdjunct Proceedings of the 36th Annual ACM Symposium on User Interface Software and Technology10.1145/3586182.3616689(1-3)Online publication date: 29-Oct-2023
https://dl.acm.org/doi/10.1145/3586182.3616689
Kelly SKaye SWhite KOviedo-Trespalacios O(2023)Clearing the way for participatory data stewardship in artificial intelligence development: a mixed methods approachErgonomics10.1080/00140139.2023.228986466:11(1782-1799)Online publication date: 18-Dec-2023
https://doi.org/10.1080/00140139.2023.2289864
Gomez Ortega ABourgeois JHutiri WKortuem G(2023)Beyond data transactions: a framework for meaningfully informed data donationAI & SOCIETY10.1007/s00146-023-01755-5Online publication date: 30-Aug-2023
https://doi.org/10.1007/s00146-023-01755-5

View Options

View options

PDF

View or Download as a PDF file.

eReader

View online with eReader.

HTML Format

View this article in HTML Format.

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Full Access

Get this Publication

Figures

Tables

Media

View Table of Conten