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Patient-generated data (PGD) show great promise for informing the delivery of personalized and patient-centered care. However, patients' data tracking does not automatically lead to data sharing and discussion with clinicians, which can make it difficult to utilize and derive optimal benefit from PGD. In this paper, we investigate whether and how patients share their PGD with clinicians and the types of challenges that arise within this context. We describe patients' immediate experiences of PGD sharing with clinicians, based on our short onsite interviews with 57 patients who had just met with a clinician at a university health center. Our analyses identified overarching patterns in patients' PGD sharing practices and the associated challenges that arise from the information asymmetry between patients and clinicians and from patients' reliance on their memory to share their PGD. We discuss the implications of our findings for designing PGD-integrated health IT systems in ways to support patients' tracking of relevant PGD, clinicians' effective engagement with patients around PGD, and the efficient sharing and review of PGD within clinical settings.
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This content will become publicly available on April 29, 2026
Communicating Numeric Risk Information to Patients
Risk information is increasingly available to health care providers and patients thanks to a growing body of health outcomes research and clinical prediction models. Meanwhile, communicating such information is encouraged for a variety of reasons. Yet clinicians often struggle to communicate risk information—or forego the task altogether due to various challenges. The challenges are real, and this paper briefly discusses six of them: (1) Clinician reliance on verbal risk descriptions, (2) Low patient numeracy; (3) Lack of meaningful numeric evidence; (4) Patient use of heuristics; (5) Uncertain risk information; and (6) The curse of knowledge. Specific strategies exist for clinicians, though, to overcome these complex challenges. In the paper, we present evidence-based best practices with examples of what clinicians can do to effectively communicate risk information to their patients (and what they should not do). The best practices include communicating with numbers, not only words; decreasing cognitive effort for patients; providing the meaning of numeric risk data important to decisions; acknowledging uncertainty; and testing communication with patients through teach-back techniques. We conclude by recommending that clinicians integrate these strategies into their existing scripts for patient encounters.
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- PAR ID:
- 10591480
- Publisher / Repository:
- Springer
- Date Published:
- Journal Name:
- Journal of General Internal Medicine
- ISSN:
- 0884-8734
- Subject(s) / Keyword(s):
- risk communication patient communication shared decision making numeracy
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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