Confidentiality Toolkit

Publication Date: November 4, 2021
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  • Pages: 115
  • Published: 2021

Introduction

Research Questions

  1. What are some of the key confidentiality requirements that govern the sharing of records collected by human services and related programs?
  2. How do offices and agencies navigate the legal, structural, and societal challenges that often arise when trying to share records collected by human services and related programs?

This Toolkit is intended for staff at all levels of government who work within offices and agencies that promote the well-being of children and families and would like to know more about:

  • How responsibly sharing records with other offices and agencies can enhance service delivery and research efforts,
  • Processes that can help assure record sharing goals are successful, and
  • Important confidentiality considerations related to sharing records.

 

This includes information about the:

  • Legal requirements that impact the privacy of records collected by human services and related programs,
  • Security frameworks that can be used to help protect electronic records,
  • Value of stakeholder engagement, who to include, and how to include them, and
  • Record sharing frameworks and processes developed to help meet applicable law and stakeholder expectations.

This toolkit also includes several samples of sharing agreements that offices and agencies can use in their own agreements.

We hope it will help offices and agencies that want to develop and expand responsible sharing activities, and dispel common misconceptions about confidentiality requirements that are often raised when trying to responsibly share records.

 

We would like to know about the individuals using this toolkit so we can further tailor our future work to you.  Please take a moment to send us an email telling us:

  1. What are your data sharing goals?
  2. What other tools could help you accomplish those goals? 
  3. What is your role and office?

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PAPERWORK REDUCTION ACT OF 1995 (Pub. L. 104-13) STATEMENT OF PUBLIC BURDEN:  Through this information collection, ACF is gathering information to learn about the individuals using this toolkit so we can tailor our future work to better assist them.   Public reporting burden for this collection of information is estimated to average of 10 minutes per respondent, including the time for reviewing instructions, gathering and maintaining the data needed, and reviewing the collection of information.  This is a voluntary collection of information. agency may not conduct or sponsor, and a person is not required to respond to, a collection of information subject to the requirements of the Paperwork Reduction Act of 1995, unless it displays a currently valid OMB control number.  The OMB # is 0970-0401 and the expiration date is 06/30/2024.  If you have any comments on this collection of information, please contact Aaron.Goldstein@acf.hhs.gov.

Purpose

Individuals who receive human services and other assistance often receive those services from several independent programs.  Providing a case worker records from multiple programs can improve their understanding of a recipient and how to better serve them.  Providing a researcher records from multiple programs can improve their understanding of the overall system and how to improve services for all recipients.  However, sharing records with other offices and agencies often raises legitimate concerns, such as whether it (a) complies with applicable law, (b) meets individuals’ privacy expectations, and (c) creates a security risk.

This toolkit discusses how to share records collected by human services and related programs.  It summarizes the key federal requirements that determine when different records may be shared.  It explains how leaders and workgroups can help resolve challenges that arise when developing sharing plans.  It advises how offices and agencies might secure electronic records.  It also includes success stories, documents used to facilitate record sharing, and links to helpful online resources.

This toolkit will not replace the important practice of consulting legal counsel.  However, we hope it will give ideas on what is possible, help resolve concerns that arise, and generally aid and inspire responsible record sharing.

Key Findings and Highlights

Developing processes to share records with other offices and agencies that balance the many competing priorities is complex but not insurmountable.  Human services and related programs are often governed by an overlapping web of requirements designed to protect the confidentiality of the individuals connected to those services.  Stakeholders often bring additional concerns and interests to the table.

There are many ways to help ensure a responsible record sharing initiative is successful.  These can include:

  • Leadership support: Responsible record sharing initiatives require significant time and effort; having support from leaders in each organization helps assure time and resources are available.

  • Communication: Responsible record sharing initiatives often involve multiple parties who generally do not initially understand the other’s processes or systems; an overall vision statement and regular communication between parties helps assure everyone shares a common understanding.

  • A program workgroup: Responsible record sharing means the minimum amount of information is shared with the minimum number of individuals; a workgroup of individuals who understand the program and the benefits of sharing records can help determine what is needed and when.

  • A legal workgroup: Responsible record sharing initiatives must navigate legal and technological limitations; a workgroup of individuals who understand the legal and technological hurdles can help with these challenges.

Building Trust: Stakeholders often approach all new record sharing initiatives with a range of legitimate and unfounded concerns; concerns, and especially unfounded concerns, often dissipate once stakeholders begin to trust the other parties and their intents.

Citation

Gabay, Mary et al. (2021). Confidentiality Toolkit, OPRE Report 2021-175, Washington, DC: Office of Planning, Research, and Evaluation, Administration for Children and Families, U.S. Department of Health and Human Services.