ArticleProceedings of the ACM on human-computer interaction2021
Divided We Stand: The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease.
Article in Proceedings of the ACM on human-computer interaction, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it, 35 citations in OpenAlex.
- Impact of Digital Interventions on the Treatment Burden of Patients With Chronic Conditions: Systematic Review.Journal of medical Internet research · 2025Pooled it
- Use of symptom-reporting tools to support endometriosis identification and management in primary care: a realist synthesis.BMJ open · 2026Review
- Informing the Design of Individualized Self-Management Regimens from the Human, Data, and Machine Learning Perspectives.ACM transactions on computer-human interaction : a publication of the Association for Computing Machinery · 2025Article
- The Voice of Endo: Leveraging Speech for an Intelligent System That Can Forecast Illness Flare-ups.Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference · 2025Article
- Endometriosis Communities on Reddit: Quantitative Analysis.Journal of medical Internet research · 2025Article
- Navigating normalcy: designing personal health visualizations for pediatric kidney transplant recipients and caregivers.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Precision Prevention: Using Data to Target the Right Intervention at the Right Intensity in the Right Community at the Right Time.Yearbook of medical informatics · 2024Article
- A Longitudinal Goal Setting Model for Addressing Complex Personal Problems in Mental Health.Proceedings of the ACM on human-computer interaction · 2022Article
- The Influence of Personal Health Data on the Health Coaching Process.Frontiers in big data · 2022Article
- Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis.Applied clinical informatics · 2020Observational
- Article
Corrections and comments
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Authors and funding
7 authors at 1 institution in 1 country.
Funding
Abstract
In chronic conditions, patients and providers need support in understanding and managing illness over time. Focusing on endometriosis, an enigmatic chronic condition, we conducted interviews with specialists and focus groups with patients to elicit their work in care specifically pertaining to dealing with an enigmatic disease, both independently and in partnership, and how technology could support these efforts. We found that the work to care for the illness, including reflecting on the illness experience and planning for care, is significantly compounded by the complex nature of the disease: enigmatic condition means uncertainty and frustration in care and management; the multi-factorial and systemic features of endometriosis without any guidance to interpret them overwhelm patients and providers; the different temporal resolutions of this chronic condition confuse both patients and provides; and patients and providers negotiate medical knowledge and expertise in an attempt to align their perspectives. We note how this added complexity demands that patients and providers work together to find common ground and align perspectives, and propose three design opportunities (considerations to construct a holistic picture of the patient, design features to reflect and make sense of the illness, and opportunities and mechanisms to correct misalignments and plan for care) and implications to support patients and providers in their care work. Specifically, the enigmatic nature of endometriosis necessitates complementary approaches from human-centered computing and artificial intelligence, and thus opens a number of future research avenues.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.