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Ethical Standards II01:23

Ethical Standards II

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Ethical standards are the backbone of nursing practice, guiding nurses as they interact with patients, families, and colleagues. These standards are crucial for providing safe, empathetic care centered on the patient's needs.
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Data Collection II01:29

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The nursing history captures and records the patient's health status, so that a care plan evolves to meet the patient's individual needs. The nursing health history is a part of the initial assessment. A comprehensive history covers all health dimensions and plays a significant role in the assessment process. A comprehensive history includes the patient's biographical information, reasons for seeking health care, expectations, present and past health history, medications, and...
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Integrating Computerized Linguistic and Social Network Analyses to Capture Addiction Recovery Capital in an Online Community
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NATIONAL ADDICTION AND HIV DATA ARCHIVE PROGRAM: DEVELOPING AN APPROACH FOR REUSE OF SENSITIVE AND CONFIDENTIAL DATA.

Kathy Etz1, Heather L Kimmel1, Amy Pienta2

  • 1National Institute on Drug Abuse, National Institutes of Health.

The Journal of Privacy and Confidentiality
|March 12, 2024
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Summary

Sharing sensitive health research data accelerates scientific discovery. Key lessons for disseminating sensitive data include protecting participant confidentiality, managing archiving costs, and supporting data accessibility.

Keywords:
Confidential DataData Reuse, Sensitive Data

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Area of Science:

  • Health Research Data Sharing
  • Data Management and Privacy
  • Scientific Advancement

Background:

  • Increasing recognition of data sharing's role in advancing science, rigor, and reproducibility.
  • Need for restricted data management for sensitive human subject data.
  • National Institutes of Health Data Management and Sharing Policy effective January 25, 2023.

Purpose of the Study:

  • To share key lessons learned from disseminating sensitive data over 13 years.
  • To highlight practices and curation standards for usable and improved datasets.
  • To provide insights for data depositors and users.

Main Methods:

  • The National Addiction and HIV Data Archive Program (NAHDAP) established in 2009.
  • Focus on sharing sensitive social and behavioral addiction research data.
  • Inclusion of quantitative, qualitative, biomarker, and imaging data.

Main Results:

  • Three key lessons learned from disseminating sensitive data.
  • Protecting human subject confidentiality is paramount.
  • Careful consideration of archiving costs for protected data is essential.
  • Providing support facilitates data discovery and use.

Conclusions:

  • Effective dissemination of sensitive health research data is achievable.
  • Established practices ensure data usability and participant protection.
  • Continued support is crucial for maximizing the impact of shared data.