Augst, Ann Kristin, Lämmerhirt, Danny, Schubert, Cornelius · Sociology of health & illness · 2025 · DOI
This study looked at how doctors and patients with chronic illnesses (including ME/CFS) use health data from popular apps and devices like smartwatches. Researchers interviewed doctors and patients in Germany to understand when doctors accept, ignore, or use this patient-collected data in medical visits. The study found that doctors have very different attitudes—some welcome the data, some reject it, and some are unsure whether to trust it.
For ME/CFS patients, this research is important because many rely on wearable devices and health apps to track symptoms when medical professionals may not recognize their condition. Understanding how doctors perceive and use (or reject) patient-collected data can help patients advocate for their own health information and identify which specialists may be more receptive to collaborative data-sharing approaches.
This qualitative study does not prove that patient-generated data improves diagnostic accuracy or patient outcomes in ME/CFS. It describes physicians' attitudes and practices but does not establish whether accepting or rejecting such data leads to better clinical decisions or health outcomes. The findings cannot be generalized beyond the German healthcare system studied.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.
Primary citation
Augst, Ann Kristin, Lämmerhirt, Danny, & Schubert, Cornelius (2025). Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations.. Sociology of health & illness. https://doi.org/10.1111/1467-9566.13864
BibTeX
@article{mecfsatlas-augst-2025-patient-generated,
author = {Augst, Ann Kristin and Lämmerhirt, Danny and Schubert, Cornelius},
title = {Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations.},
journal = {Sociology of health & illness},
year = {2025},
doi = {10.1111/1467-9566.13864},
note = {PubMed: 39540662},
url = {https://www.mecfsatlas.com/evidence/augst-2025-patient-generated},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-26. https://www.mecfsatlas.com/evidence/augst-2025-patient-generated
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