research-article

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Using Data to Approach the Unknown: Patients' and Healthcare Providers? Data Practices in Fertility Challenges

Authors:

Mayara Costa Figueiredo,

Yunan ChenAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 4, Issue CSCW3

Article No.: 227, Pages 1 - 35

https://doi.org/10.1145/3432926

Published: 05 January 2021 Publication History

Abstract

Medical practices have always been data oriented: healthcare providers decisions are based on data, both clinically generated and patient reported. With the increased use of patient-generated health data (PGHD), other types of data are entering providers? practices and influencing patient-provider collaboration. We studied the use of PGHD and its related data practices in the context of fertility, a health concern that is uncertain, complex, and data intensive. We interviewed 14 patients who are facing or have faced challenges to conceive and 5 healthcare providers specialized in infertility. Our findings show that patients and providers use PGHD in different ways but with the common goal of exploring 'the unknown' generated by the uncertainties of fertility. Providers use patients? data in a rational protocol, aiming to identify possible causes of infertility and define a treatment course. Patients use data in a much more emotional way, learning about their bodies while struggling with data interpretation challenges. By analyzing these data practices, we discuss the principles behind their differences and describe how they have individual benefits for each specific group. We then suggest that fertility technologies need to consider such principles, highlight the existing boundary between patients' and providers' data practices, and focus on bridging instead of merging them in order to facilitate collaboration and maintain their independent benefits.

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https://doi.org/10.1186/s12905-024-03036-9
Su ZKamath STirakitsoontorn PChen Y(2024)The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious IllnessesProceedings of the ACM on Human-Computer Interaction10.1145/36410218:CSCW1(1-35)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3641021
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Index Terms

Using Data to Approach the Unknown: Patients' and Healthcare Providers? Data Practices in Fertility Challenges
1. Applied computing
  1. Life and medical sciences
    1. Consumer health
2. Human-centered computing
  1. Collaborative and social computing
    1. Empirical studies in collaborative and social computing

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 4, Issue CSCW3

CSCW

December 2020

1825 pages

EISSN:2573-0142

DOI:10.1145/3446568

Editor:
Jeff Nichols
Apple Inc., United States

Issue’s Table of Contents

Copyright © 2021 ACM.

Permission to make digital or hard copies of all or part 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 components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

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Association for Computing Machinery

New York, NY, United States

Publication History

Published: 05 January 2021

Published in PACMHCI Volume 4, Issue CSCW3

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UCI Donald Bren School of Information and Computer Sciences

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Guardado SKarampela MIsomursu MGrundstrom C(2024)Use of Patient-Generated Health Data From Consumer-Grade Devices by Health Care Professionals in the Clinic: Systematic ReviewJournal of Medical Internet Research10.2196/4932026(e49320)Online publication date: 31-May-2024
https://doi.org/10.2196/49320
Simegn WHussen EMaru YSeid ALimenh LAyenew WMelese MAtsbeha B(2024)Knowledge, attitude, practices and associated factors of family planning among women living with hiv at the university of Gondar specialized hospital: a cross sectional studyBMC Women's Health10.1186/s12905-024-03036-924:1Online publication date: 12-Apr-2024
https://doi.org/10.1186/s12905-024-03036-9
Su ZKamath STirakitsoontorn PChen Y(2024)The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious IllnessesProceedings of the ACM on Human-Computer Interaction10.1145/36410218:CSCW1(1-35)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3641021
Song QMa RKou YGui X(2024)Collective Privacy Sensemaking on Social Media about Period and Fertility Tracking post Roe v. WadeProceedings of the ACM on Human-Computer Interaction10.1145/36410008:CSCW1(1-35)Online publication date: 26-Apr-2024
https://dl.acm.org/doi/10.1145/3641000
Figueiredo MAnkrah EPowell JEpstein DChen Y(2024)Powered by AIProceedings of the ACM on Interactive, Mobile, Wearable and Ubiquitous Technologies10.1145/36314147:4(1-24)Online publication date: 12-Jan-2024
https://dl.acm.org/doi/10.1145/3631414
Branco DMóteiro MBouça-Machado RMiranda RReis TDecoroso ÉCardoso RRamalho JRato FMalheiro JMiranda DCaniça VPona-Ferreira FGuerreiro DLeitão MBraz AJ Ferreira JGuerreiro T(2024)Co-designing Customizable Clinical Dashboards with Multidisciplinary Teams: Bridging the Gap in Chronic Disease CareProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642618(1-18)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642618
Ma MKim CHall KKim J(2023)It Takes Two to Avoid Pregnancy: Addressing Conflicting Perceptions of Birth Control Pill Responsibility in Romantic RelationshipsProceedings of the ACM on Human-Computer Interaction10.1145/36100737:CSCW2(1-27)Online publication date: 4-Oct-2023
https://dl.acm.org/doi/10.1145/3610073
Yoo DBhatnagar AErnala SAli ABirnbaum MAbowd GDe Choudhury M(2023)Discussing Social Media During Psychotherapy Consultations: Patient Narratives and Privacy ImplicationsProceedings of the ACM on Human-Computer Interaction10.1145/35794797:CSCW1(1-24)Online publication date: 16-Apr-2023
https://dl.acm.org/doi/10.1145/3579479
Ku MAckerman M(2023)Calibrated Uncertainty: How In-Vitro Fertilization Patients Use Information to Regulate EmotionProceedings of the ACM on Human-Computer Interaction10.1145/35794647:CSCW1(1-24)Online publication date: 16-Apr-2023
https://dl.acm.org/doi/10.1145/3579464
Park JCampo Woytuk NYadav DHuang XBlanco Cardozo RCiolfi Felice MLampinen ABalaam M(2023)Ambivalences in Digital Contraception: Designing for Mixed Feelings and Oscillating RelationsProceedings of the 2023 ACM Designing Interactive Systems Conference10.1145/3563657.3596062(416-430)Online publication date: 10-Jul-2023
https://dl.acm.org/doi/10.1145/3563657.3596062
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