ArticleJournal of medical Internet research2019
Creating Consumer-Generated Health Data: Interviews and a Pilot Trial Exploring How and Why Patients Engage.
Article in Journal of medical Internet research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Who cites it
9 citing papers in PubMed.
- 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
- Patient-Generated Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for Data Security and Privacy.Journal of personalized medicine · 2024Review
- Unleashing the Potential for Patient-Generated Health Data (PGHD).Journal of general internal medicine · 2024Article
- Self-Monitoring Diabetes-Related Foot Ulcers with the MyFootCare App: A Mixed Methods Study.Sensors (Basel, Switzerland) · 2023Article
- Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review.Journal of medical Internet research · 2022Article
- Smartphone Users' Persuasion Knowledge in the Context of Consumer mHealth Apps: Qualitative Study.JMIR mHealth and uHealth · 2021Article
- Identifying Mobile Health Engagement Stages: Interviews and Observations for Developing Brief Message Content.Journal of medical Internet research · 2020Article
- Clinician Perspectives and Design Implications in Using Patient-Generated Health Data to Improve Mental Health Practices: Mixed Methods Study.JMIR formative research · 2020Article
- Secondary care provider attitudes towards patient generated health data from smartwatches.NPJ digital medicine · 2020Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundConsumer-generated health data (CGHD) are any clinically relevant data collected by patients or their carers (consumers) that may improve health care outcomes. Like patient experience measures, these data reflect the consumer perspective and is part of a patient-centric agenda. The use of CGHD is believed to enhance diagnosis, patient engagement, and thus foster an improved therapeutic partnership with health care providers.
objectiveThe aim of this study was to further identify how these data were used by consumers and how it influences engagement via a validated framework. In addition, carer data has not been explored for the purpose of engagement.
methodsStudy 1 used interviews with CGHD-experienced patients, carers, and doctors to understand attitudes about data collection and use, developing an ontological framework. Study 2 was a pilot trial with carers (parents) of children undergoing laparoscopic appendectomy. For 10 days carers generated and emailed surgical site photographs to a tertiary children's hospital. Subsequently, carers were interviewed about the engagement framework. In total, 60 interviews were analyzed using theme and content analysis.
resultsThis study validates a framework anchored in engagement literature, which categorizes CGHD engagement outcomes into 4 domains: physiological, cognitive, emotional, and behavioral. CGHD use is complex, interconnected, and can be organized into 10 themes within these 4 domains.
conclusionsCGHD can instigate an ecosystem of engagement and provide clinicians with an enhanced therapeutic relationship through an extended view into the patient's world. In addition to clinical diagnosis and efficient use of health care resources, data offer another tool to manage consumers service experience, especially the emotions associated with the health care journey. Collection and use of data increases consumers sense of reassurance, improves communication with providers, and promotes greater personal responsibility, indicating an empowering consumer process. Finally, it can also improve confidence and satisfaction in the service.
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