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Clinical Broad Data Sharing Consent Resources
This resource for clinicians and clinical laboratories contains information and sample broad consent agreements (in several languages) for using identifiable genetic and health information in future research.
Year 2017
Cloud Computing: A Primer on Legal Issues, Including Privacy and Data Security Concerns
This slide deck provides an overview of legal issues associated with cloud computing and provides considerations for negotiating contrAct; terms with cloud computing providers.
Year 2010
Legal Issues Concerning Identifiable Health Data Sharing Between State/ Local Public Health Authorities And Tribal Epidemiology Centers In Selected U.S. Jurisdictions
This resource provides a general overview of the legal authority of state, local and tribal public health agencies to collect, use, and share data for public health and research purposes.
Year 2011
Make open data Sharing a no-brainer for ethics committees
This resource is an online repository for consent forms that have been used in IRB-approved research, with a focus on neuroimaging research.
Year 2018
Measuring Performance: A Guidance Document for Promise Neighborhoods on Collecting Data and Reporting Results
This resource provides a process for Promise Neighborhood grantees to establish data systems and processes to collect and report data required by the Government Performance and Results Act; (GPRA).
Year 2013
National Forum on Youth Violence Prevention: HIPAA Privacy Rule Considerations
This HHS Office for Civil Rights slide deck provides a brief overview of the HIPAA disclosure provisions.
Year 2011
Registries for Evaluating Patient Outcomes: A User's Guide Third Edition
This two-volume manual provides detailed information on creating and operating various health-related registries.
Year 2014
Connecting the Dots: The Promise of Integrated Data Systems for Policy Analysis and Systems Reform
This resource provides an overview of the legal, ethical, scientific, and economic challenges associated with creating integrated data systems for inter-agency collaborations and research.
Year 2010
Consumer consent options for electronic Health Information Exchange;: policy considerations and analysis
This document reviews and evaluates the potential effects of different consent models for Health Information Exchange; providing policymakers with considerations and tradeoffs for each model.
Year 2010
Data Sharing: Creating Agreements In support of community-academic partnerships
This resource provides guidelines and best Practices for data sharing between academia and community organizations.
Year 2012
Developing Data Sharing Agreements
This resource provides information and links relating to data sharing agreements pertaining to education data and student records.
Year 2016
Sharing Data and Protecting Your Community
This resource provides information and guidance associated with research involving the genetic information of tribal communities and includes links to example data use contrAct;s with Tribal and American Indian/Alaskan Native organizations.
Year 2011
Submit a Data Sharing Application
This resource provides guidance and links to other resources for researchers needing data sharing agreements to use military health information managed by the US Defense Health.
Year 2015
Summary of the HIPAA Privacy Rule
This HHS guidance provides an overview of the federal HIPAA protections and requirements.
Year
Tribal Epidemiology Toolkit
This toolkit provides resources and best Practices to promote population health among tribal communities by enhancing public health surveillance in Indian Country.
Year 2013
Health Information & the Law
This website provides information on state and federal laws pertaining to health information. It provides overviews of state and federal laws, analysis of important legal issues, and various legal resources.
Year 2018
Laws and Regulations Governing the Disclosure of Health Information (2014 update)
This issue brief provides an overview of the governance structure of health information with a specific focus on the laws and regulations relating to disclosure.
Year 2014
A Legal Guide to Privacy and Security
This resource provides an overview of several federal data protection laws relating to different sectors and select state law frameworks.
Year 2017
Recommended Informed Consent Language for Data Sharing
This resource provides general information and recommendations relating to informed consent documents for researchers.
Year 2014
American Statistical Association Committee on Privacy and Confidentiality
This resource provides guidance, Resource links; training modules, and legal summaries relating to privacy and confidentiality in a variety of sectors.
Year 2011
Sharing data: legal and policy considerations
This resource provides best Practices concerning the legal and policy considerations pertaining to sharing research data.
Year 2012
Summary of Selected Federal Laws and Regulations Addressing Confidentiality, Privacy and Security
This resource provides a summary of nearly 50 different federal laws relating to data protection in different sectors.
Year 2010
Toolkit for Communities Using Health Data
This report by the National Committee on Vital Statistics describes the principles for data governance and stewardship.
Year 2015
Foundations in Privacy Toolkit
This toolkit contains template policies and procedures, template agreements, flow charts, and checklists designed to assist businesses and organizations in Minnesota comply with both state and federal laws.
Year 2017
Legal & Ethical Considerations for Health Department Data Sharing
This document describes legal and ethical for public health use of HIV data. It focuses on state laws and whether health departments can use or share HIV data for various purposes.
Year 2018
Data License Agreement
This resource describes the process of entering a data license agreement to use HUD data for research purposes and provides links to the data license application and other resources.
Year 2017
Data Policy Toolkit: Implementing the State Blueprint
This issue brief argues for the creation of longitudinal data systems and proposes that states adopt legislation; to remove policy barriers and authorize data sharing.
Year 2016
Data-Sharing Tool Kit for Communities: How To Leverage Community Relationships While Protecting Student Privacy
This toolkit provides information and resources to help users better understand how to share data protected by FERPA.
Year 2016
Privacy Tools for Data Sharing: Lessons Learned and Directions Forward
This resource compiles the slides and recordings of an interdisciplinary workshop summarizing findings from a 5-year NSF Secure and Trustworthy Cyberspace Frontier Project.
Year 2017
Research
This HHS guidance document provides an overview of the HIPAA provisions relating to the use of protected health information for research purposes.
Year 2018
Using Administrative Data for Randomized Evaluations
This resource provides guidance on obtaining and using nonpublic administrative data for evaluation purposes.
Year 2015