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Related Concept Videos

Ethical Standards I01:25

Ethical Standards I

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The American Nurses Association (ANA) created and implemented the first nationally accepted Code of Ethics for Nurses with Interpretive Statements. The Code of Ethics is a living document regularly updated by the ANA and establishes an ethical standard that is non-negotiable for nurses in all roles and settings.
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Ethical Standards II01:23

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Ethics and Bioethics01:22

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Ethics is a philosophical study of moral actions. Ethics attempts to determine what is valuable for individuals and society. It examines the rational justification of moral judgments and analyzes what is morally just, fair, and right. Bioethics is a sub-discipline of applied ethics that analyzes the philosophical, social, and legal issues in life sciences and medicine. Ethical theories serve as a foundation for decision-making and represent the viewpoints from which people seek direction. They...
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Issues And Trends In Healthcare Delivery System01:29

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Standards of Care II01:19

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Nurses bear specific legal responsibilities under several federal statutes, including:
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Purpose of Health Records I01:11

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The vital purpose of health records is to provide a complete and accurate account of a patient's medical history, including communication, diagnostic and therapeutic orders, care planning, research, and quality review.
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Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform
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Patient Experiences, Trust, and Preferences for Health Data Sharing.

Rochelle D Jones1, Chris Krenz1, Kent A Griffith1

  • 1University of Michigan, Ann Arbor, MI.

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|December 2, 2021
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Summary

Patient experiences with healthcare quality, costs, and communication significantly shape trust in health systems. Improving these areas is crucial for fostering patient confidence in data sharing for research and quality improvement initiatives.

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Area of Science:

  • Health Services Research
  • Bioethics
  • Patient-Centered Care

Background:

  • Patient trust is vital for the secondary use of clinical data in research and quality improvement.
  • Understanding experiences that build trust and influence data sharing preferences is essential for learning health care systems (LHS).

Purpose of the Study:

  • To explore how patients' lived experiences within the healthcare system influence their trust and preferences for data sharing.
  • To inform the ethical development of learning health care systems (LHS).

Main Methods:

  • Democratic deliberations involving 217 cancer patients were conducted from June 2017 to May 2018.
  • Transcripts were analyzed using interpretive description and thematic analysis to identify key themes.
  • Focus on personal healthcare experiences, provider/insurer interactions, and their impact on trust and data sharing.

Main Results:

  • Four key domains emerged: quality of care, healthcare costs, provider/insurer transparency and communication, and care coordination.
  • These experiences directly influenced patients' trust in healthcare decision-makers and their views on data sharing.
  • Patients' lived experiences are central to their willingness to share data.

Conclusions:

  • Enhancing patient experiences with care quality, costs, transparency, and coordination is necessary to build trust in healthcare systems.
  • Improvements in these fundamental aspects of care delivery are critical for the successful implementation of learning health care systems (LHS).
  • Addressing patient concerns and fostering trust are paramount for secondary data use.