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                  Ethics and Integrity in Data Use and Management
HIBB TITLE: Ethics and Integrity in Data Use and Management

ABSTRACT: This module defines basic concepts related to the ethics of data use, compares the ethics of using
clinical and research data, and reviews key ethical guidelines and regulations. The module explains why U.S.
regulations are relevant for data managers outside the U.S. The module outlines how key ethics concepts affect
data retention, sharing, security, ownership, and analysis as well as publication of research results.

LEARNING OBJECTIVES: Upon completion of this module, students will be able to identify core concepts
related to data ethics and integrity; identify pertinent data use guidelines and regulations; and describe good
practices for data retention, sharing, security, and analysis.

KEYWORD(S): bioethics; data integrity; data security; ethical principles; medical ethics; OpenMRS; Privacy
Rule; protected health information (Keywords selected by HIBBs staff and listed in alphabetical order)

LICENSE: Creative Commons Attribution Share Alike 3.0 Unported

LANGUAGE: English

CONTENT SUBMITTED BY: REACH-Informatics

AUTHOR(S): John E. Sidle, MD, MS; REACH-Informatics

DATE CONTENT CREATED: May 2010

DATE HIBB CREATED: August 30, 2010

VERSION NUMBER OF HIBB: Version 1.0

DATE VERSION 1.0 HIBB REVISED: Not applicable

FINANCIAL SUPPORT PROVIDED BY: National Institutes of Health, Fogarty International Center;
Rockefeller Foundation

TARGET AUDIENCE: Health care data managers, collectors and users

AVAILABLE FORMAT(S)/SIZE OF FILES: Microsoft PowerPoint 97-2003, 2.6 MB, 32 slides; audio only,
MP3, 45.9 MB, 51:32 minutes; slides with audio, MP4, 12 MB, 50:15 minutes; smart phone MP4, 30.8 MB,
50:15 minutes

TECHNOLOGICAL REQUIREMENTS FOR USERS: Microsoft PowerPoint 97-2003; MP3 Player
application; Quicktime, DivX, VLC; smart phone


                                      E-mail: HIBBs@amia.org ♦ WWW.GHIP.NET
Detailed Specifications:
                                                          Ethics and Integrity in Data Use and Management   2




DURATION OF THE MODULE: Video, audio and smart phone files: approximately 51 minutes

LEVEL OF CONTENT:          Basic

PREREQUISITE KNOWLEDGE: None

LINKS TO RELATED HIBBS MODULES: Data Quality: Missing Data

SELF-ASSESSMENT: Available

USE OF HIBB IN TRAINING: Module used in 2-week training delivered by Regional East African Center
for Health Informatics (REACH-Informatics) in Eldoret, Kenya, in May 2010. The Regional East African Centre
of Health Informatics (REACH-Informatics) in Eldoret was established in 2009 with the aim of providing East
Africans with short courses and practicum training to support the development, implementation, maintenance,
evolution and use of EHRs.

FEEDBACK ON USE: Not applicable

ADAPTATION OF HIBB: Not applicable

AUXILIARY MATERIALS: References to journal articles and other resources




                                    E-mail: HIBBs@amia.org ♦ WWW.GHIP.NET

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Ethics and Integrity in Data Use and Management Detailed Specifications

  • 1. Detailed Specifications Ethics and Integrity in Data Use and Management HIBB TITLE: Ethics and Integrity in Data Use and Management ABSTRACT: This module defines basic concepts related to the ethics of data use, compares the ethics of using clinical and research data, and reviews key ethical guidelines and regulations. The module explains why U.S. regulations are relevant for data managers outside the U.S. The module outlines how key ethics concepts affect data retention, sharing, security, ownership, and analysis as well as publication of research results. LEARNING OBJECTIVES: Upon completion of this module, students will be able to identify core concepts related to data ethics and integrity; identify pertinent data use guidelines and regulations; and describe good practices for data retention, sharing, security, and analysis. KEYWORD(S): bioethics; data integrity; data security; ethical principles; medical ethics; OpenMRS; Privacy Rule; protected health information (Keywords selected by HIBBs staff and listed in alphabetical order) LICENSE: Creative Commons Attribution Share Alike 3.0 Unported LANGUAGE: English CONTENT SUBMITTED BY: REACH-Informatics AUTHOR(S): John E. Sidle, MD, MS; REACH-Informatics DATE CONTENT CREATED: May 2010 DATE HIBB CREATED: August 30, 2010 VERSION NUMBER OF HIBB: Version 1.0 DATE VERSION 1.0 HIBB REVISED: Not applicable FINANCIAL SUPPORT PROVIDED BY: National Institutes of Health, Fogarty International Center; Rockefeller Foundation TARGET AUDIENCE: Health care data managers, collectors and users AVAILABLE FORMAT(S)/SIZE OF FILES: Microsoft PowerPoint 97-2003, 2.6 MB, 32 slides; audio only, MP3, 45.9 MB, 51:32 minutes; slides with audio, MP4, 12 MB, 50:15 minutes; smart phone MP4, 30.8 MB, 50:15 minutes TECHNOLOGICAL REQUIREMENTS FOR USERS: Microsoft PowerPoint 97-2003; MP3 Player application; Quicktime, DivX, VLC; smart phone E-mail: HIBBs@amia.org ♦ WWW.GHIP.NET
  • 2. Detailed Specifications: Ethics and Integrity in Data Use and Management 2 DURATION OF THE MODULE: Video, audio and smart phone files: approximately 51 minutes LEVEL OF CONTENT: Basic PREREQUISITE KNOWLEDGE: None LINKS TO RELATED HIBBS MODULES: Data Quality: Missing Data SELF-ASSESSMENT: Available USE OF HIBB IN TRAINING: Module used in 2-week training delivered by Regional East African Center for Health Informatics (REACH-Informatics) in Eldoret, Kenya, in May 2010. The Regional East African Centre of Health Informatics (REACH-Informatics) in Eldoret was established in 2009 with the aim of providing East Africans with short courses and practicum training to support the development, implementation, maintenance, evolution and use of EHRs. FEEDBACK ON USE: Not applicable ADAPTATION OF HIBB: Not applicable AUXILIARY MATERIALS: References to journal articles and other resources E-mail: HIBBs@amia.org ♦ WWW.GHIP.NET