ArticleJournal of the American Medical Informatics Association : JAMIA2019
Early experiences with patient generated health data: health system and patient perspectives.
Article in Journal of the American Medical Informatics Association : JAMIA, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers.
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Who cites it
25 citing papers in PubMed.
- Understanding Patient Perspectives on Digital Smoking History Data Collection.CHEST pulmonary · 2025Article
- Factors impacting electronic patient-generated data use in safety-net systems: a qualitative study.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Detecting Redundant Health Survey Questions by Using Language-Agnostic Bidirectional Encoder Representations From Transformers Sentence Embedding: Algorithm Development Study.JMIR medical informatics · 2025Article
- A sociotechnical approach to defining clinical responsibilities for patient-generated health data.NPJ digital medicine · 2025Article
- Attitudes of healthcare professionals and researchers toward wearable and app derived patient generated health data.NPJ digital medicine · 2025Article
- Patient engagement pilot for uncontrolled hypertension: implications for quality, safety, and population health.Frontiers in health services · 2025Article
- Review
- Facilitators and Barriers to Integrating Patient-Generated Blood Pressure Data into Primary Care EHR Workflows.Applied clinical informatics · 2024Article
- Citizens' Options When Accessing and Sharing Health Information - An International Survey of IMIA Member Countries.Yearbook of medical informatics · 2024Article
- Data Interoperability for Ambulatory Monitoring of Cardiovascular Disease: A Scientific Statement From the American Heart Association.Circulation. Genomic and precision medicine · 2024Article
- Patient-Generated Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for Data Security and Privacy.Journal of personalized medicine · 2024Review
- Efficacy of Digital Outreach Strategies for Collecting Smoking Data: Pragmatic Randomized Trial.JMIR formative research · 2024Article
- Unleashing the Potential for Patient-Generated Health Data (PGHD).Journal of general internal medicine · 2024Article
- Buy or Build: Challenges Developing Consumer Digital Health Interventions.Applied clinical informatics · 2023Article
- Use of Self-Measured Blood Pressure Monitoring to Improve Hypertension Equity.Current hypertension reports · 2022Review
- Challenges and recommendations for wearable devices in digital health: Data quality, interoperability, health equity, fairness.PLOS digital health · 2022Review
- Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study.Journal of medical Internet research · 2022Article
- Developing a Dietary Lifestyle Ontology to Improve the Interoperability of Dietary Data: Proof-of-Concept Study.JMIR formative research · 2022Article
- Opportunities and Challenges of Integrating Food Practice into Clinical Decision-Making.Applied clinical informatics · 2022Article
- Patient-generated health data earn a seat at the table: clinical adoption during the COVID-19 transition to telemedicine.JAMIA open · 2021Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAlthough patient generated health data (PGHD) has stimulated excitement about its potential to increase patient engagement and to offer clinicians new insights into patient health status, we know little about these efforts at scale and whether they align with patient preferences. This study sought to characterize provider-led PGHD approaches, assess whether they aligned with patient preferences, and identify challenges to scale and impact. MATERIALS AND
methodsWe interviewed leaders from a geographically diverse set of health systems (n = 6), leaders from large electronic health record vendors (n = 3), and leaders from vendors providing PGHD solutions to health systems (n = 3). Next, we interviewed patients with 1 or more chronic conditions (n = 10), half of whom had PGHD experience. We conducted content analysis to characterize health system PGHD approaches, assess alignment with patient preferences, and identify challenges.
resultsIn this study, 3 primary approaches were identified, and each was designed to support collection of a different type of PGHD: 1) health history, 2) validated questionnaires and surveys, and 3) biometric and health activity. Whereas patient preferences aligned with health system approaches, patients raised concerns about data security and the value of reporting. Health systems cited challenges related to lack of reimbursement, data quality, and clinical usefulness of PGHD. DISCUSSION: Despite a federal policy focus on PGHD, it is not yet being pursued at scale. Whereas many barriers contribute to this narrow pursuit, uncertainty around the value of PGHD, from both patients and providers, is a primary inhibitor.
conclusionOur results reveal a fairly narrow set of approaches to PGHD currently pursued by health systems at scale.
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