extended-abstract

Towards Responsible Data Practices in Digital Health: A case study of an open source community's journey

Authors:

Elizabeth Dunbar,

Helen Elizabeth Olsen,

Beatrice Wasunna,

Jacqueline Edwards,

Isaac HolemanAuthors Info & Claims

CHI EA '21: Extended Abstracts of the 2021 CHI Conference on Human Factors in Computing Systems

Article No.: 42, Pages 1 - 8

https://doi.org/10.1145/3411763.3443438

Published: 08 May 2021 Publication History

Abstract

In recent years, privacy and data rights have garnered growing attention in public discourse, policy making, and scholarly research. New data protection laws are being rolled out globally to codify data rights and ensure individual control over how personal data is shared and used. This evolving landscape presents several opportunities and challenges for healthcare. In this case study, we outline a design research agenda that emerged from the practical needs of an open source community focused on digital health software for community health in low- and middle-income countries. We situate this case study in the global landscape of data regulations, and the call for responsible data practices that go above and beyond regulatory compliance. We share findings from the formative stages of our multi-stage design process, which include a scoping literature review and a reframing of institutional policies and procedures. A primary contribution of our case study is that it offers an example of the institutional ‘pre-work’ necessary to make sense of the complex data protection landscape, and to chart a path forward for designing software that better supports responsible data practices. This case study also articulates the important role for digital health designers and implementers in operationalizing patient data rights.

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Cited By

McInnis BPindus RKareem DGamboa SNebeker C(2024)Exploring the Future of Informed Consent: Applying a Service Design ApproachProceedings of the ACM on Human-Computer Interaction10.1145/36373308:CSCW1(1-31)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637330
Orii LFeldacker CTweya HAnderson R(2024)eHealth Data Security and Privacy: Perspectives from Diverse Stakeholders in MalawiProceedings of the ACM on Human-Computer Interaction10.1145/36373238:CSCW1(1-26)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637323
Kommiya Mothilal RGuha SAhmed S(2024)Towards a Non-Ideal Methodological Framework for Responsible MLProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642501(1-17)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642501

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cover image ACM Conferences

CHI EA '21: Extended Abstracts of the 2021 CHI Conference on Human Factors in Computing Systems

May 2021

2965 pages

ISBN:9781450380959

DOI:10.1145/3411763

Editors:
Yoshifumi Kitamura
Tohoku University, Japan
,
Aaron Quigley
University of New South Wales, Australia
,
Katherine Isbister
University of California Santa Cruz, USA
,
Takeo Igarashi
The University of Tokyo, Japan

Copyright © 2021 Owner/Author.

Permission to make digital or hard copies of part or all of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for third-party components of this work must be honored. For all other uses, contact the Owner/Author.

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Published: 08 May 2021

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CHI '21: CHI Conference on Human Factors in Computing Systems

May 8 - 13, 2021

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Overall Acceptance Rate 6,164 of 23,696 submissions, 26%

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Cited By

McInnis BPindus RKareem DGamboa SNebeker C(2024)Exploring the Future of Informed Consent: Applying a Service Design ApproachProceedings of the ACM on Human-Computer Interaction10.1145/36373308:CSCW1(1-31)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637330
Orii LFeldacker CTweya HAnderson R(2024)eHealth Data Security and Privacy: Perspectives from Diverse Stakeholders in MalawiProceedings of the ACM on Human-Computer Interaction10.1145/36373238:CSCW1(1-26)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3637323
Kommiya Mothilal RGuha SAhmed S(2024)Towards a Non-Ideal Methodological Framework for Responsible MLProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642501(1-17)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642501

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