patient engagement, decision making, patient-centered outcomes research, patient-centered care, data collection, organizational innovation
Background: The emerging health care system increasingly values patient engagement and shared decision-making between patients and their providers. The practice of these values is gaining importance as the patient-centered medical home model and personalized medicine come into greater use.
Opportunity for Improvement: Exploration of patient preferences about personal health data use for research and quality improvement is a fundamental element of the provider-patient relationship. Giving patients an explicit opportunity to discuss their options about use of their data and implementing a process that allows patients to receive desired communications about how their information is used can help build patient trust, a requirement for successful care partnerships.
Practice Advancement: Working to change organizational cultures that exclude patients from participation in important decisions related to personal health information use promotes a strong patient-provider relationship and, ultimately, lays the foundation for improved health care through expanded use of patient data.
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"The Future of Patient Engagement in the Governance of Shared Data,"
eGEMs (Generating Evidence & Methods to improve patient outcomes):
2, Article 6.
Available at: http://repository.edm-forum.org/egems/vol4/iss2/6