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Digital Frontier Alliance 

Advocacy Toolkit

My Data. My Dignity. My Voice.

This is the My Data. My Dignity. My Voice. initiative logo. The initiative title is placed above the logo in a semi-circle. The logo is a deep navy circle with a bronze image of the state of Michigan in the center. There are lines suggesting a computer grid over the state. Also placed over the lower peninsula image is an image of a shield with a lock in the center. The shield and lock are bronze and magenta.

How to Use the Toolkit

  1. Learn more about the issues and risks of data misuse 

  2. Read about some Proposed Action Items for improving data privacy protections in MI's public behavioral health system

  3. Contact State and Local leaders to ask them to support solutions (see the Advocacy Playbook: Actions for every stakeholder group and contact information that follow)

  4. Read and share Advocacy Materials (including Data Dignity Pledge, Definitions, Consent Checklist, and Infographics) 

  5. Help draft a Data Dignity Bill of Rights

Improve Data Privacy Protections and Close Loopholes in MI's Public Behavioral Health

Proposed Action Items

Let's Start the Conversation!

Opt-in &
Meaningful Consent

Behavioral health leaders must improve the meaningful consent standards for 3rd-party data‑sharing agreements. Meaningful consent means that people can understand what an agreement says and can choose to opt-in (say yes or no), without it hurting their services

Data Dignity Pledge

Organizations, leaders, and clinicians are invited to sign the Data Dignity Pledge, recognizing that sensitive behavioral health data is a right - not a commodity - and pledging to adopt policies, contract language, and other tools that follow the spirit of data protection laws, not just the letter.

FY27 Statewide Workgroup

Ask State leaders to convene a statewide workgroup on Recipient Rights to: (1) review the risks created by current data privacy loopholes in the public behavioral health system, (2) recommend updates to guidelines, laws, contract requirements, and policies, and (3) set up an annual review process to keep pace with changing technology.

Office of Recipient Rights

Ensure the State of Michigan Office of Recipient Rights has enough resources to keep up with changing technology and recipients’ data privacy rights, to share this information, to set clear compliance requirements, and to conduct regular reviews.

Laws, Policies & Contracts

The State can strengthen data protections for recipients and close loopholes in downstream contracts by adding new policies and language to the FY27 PIHP and MHP contracts. The legislature can pass laws that put the sensitive data of protected, vulnerable populations ahead of commercial interests. Local providers, PIHPs, MHPs, CMHSPs, and CCBHCs can improve privacy protections through their own contracts and policies. A statewide workgroup can help standardize these requirements so recipients are protected across the State.*

*Acronyms:

  • ​Prepaid Inpatient Health Plans (PIHPs)

  • Community Mental Health Services Programs (CMHSPs)

  • Medicaid Health Plans (MHPs)

  • Certified Community Behavioral Health Clinics (CCBHCs)

Data Dignity Bill of Rights

People receiving services through the public behavioral health system and their advocates can begin drafting a Bill of Rights to tell State and Local leaders and providers what data privacy and data dignity mean to them, and what they are expecting from those entrusted with their care.
 

Please click on the button below to start sharing your ideas for the Bill of Rights. More information about sharing ideas and collaborating with others will be available soon. 
Help Write a "Data Dignity Bill of Rights"

Board Resolutions

Boards of Directors of public PIHPs and private organizations can adopt resolutions that: (1) promise people receiving services that the organization will proactively close loopholes that put their sensitive information at risk, (2) direct leadership to add contract language and policies that protect this data, and (3) require public transparency and accountability.

Ongoing Learning & Awareness

People receiving services need clear, ongoing information about how their data is used, what their rights are, and how to speak up if something feels wrong. Leaders in the system also need to stay up to date on data privacy risks, best practices, and new laws so they can keep policies, contracts, and day‑to‑day practices aligned with data dignity.

Ethical data practices are a shared duty

Advocacy Playbook

Actions for Every Stakeholder Group

Persons Served,
Families, and Advocates

  1. Help define meaningful consent

  2. Tell organizations to sign the Data Dignity Pledge

  3. Advocate for an FY27 Statewide Workgroup and participate in It

  4. Talk to the Office of Recipient Rights about data protections

  5. Tell State and Local leaders to revise laws, policies, and contracts to close loopholes

  6. Help write the Data Dignity Bill of Rights

  7. Tell your local Boards to pass resolutions to support data privacy

  8. Stay educated and aware of evolving technology 

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State of Michigan and Legislators

  1. Implement meaningful consent protections for 3rd- party data sharing

  2. Establish an FY27 Statewide Workgroup

  3. Ensure the Office of Recipient Rights has enough funding and resources

  4. Establish new laws, policies, and contract language to improve data protections for public behavioral health

  5. Stay educated and aware of evolving technology 

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PIHPs, CMHSPs, CCBHCs & Private MI Health Plans*

  1. Implement meaningful consent protections for 3rd- party data sharing

  2. Sign Data Dignity Pledge 

  3. Support FY27 Statewide Workgroup

  4. Coordinate goals with the Office of Recipient Rights 

  5. Establish new policies and contract language to improve data protections for public behavioral health

  6. Support Data Dignity Bill of Rights standards

  7. Pass resolutions from Board of Directors

  8. Stay educated and aware of evolving technology  

Teamwork demonstrates the concept of unity and solidarity Collaboration between coworkers

Behavioral Health Service Providers

  1. Implement meaningful consent protections for 3rd- party data sharing

  2. Sign Data Dignity Pledge 

  3. Support FY27 Statewide Workgroup

  4. Coordinate goals with the Office of Recipient Rights 

  5. Establish new policies and contract language to improve data protections for public behavioral health

  6. ​Support Data Dignity Bill of Rights standards

  7. Pass resolutions from Board of Directors

  8. Stay educated and aware of evolving technology  

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Contact Leaders Here

*Acronyms:

  • ​Prepaid Inpatient Health Plans (PIHPs)

  • Community Mental Health Services Programs (CMHSPs)

  • Medicaid Health Plans (MHPs)

  • Certified Community Behavioral Health Clinics (CCBHCs)

Data Dignity

Advocacy Materials

Supporting documents are available for download on this page.

This is the My Data. My Dignity. My Voice. initiative logo. The initiative title is placed above the logo in a semi-circle. The logo is a deep navy circle with a bronze image of the state of Michigan in the center. There are lines suggesting a computer grid over the state. Also placed over the lower peninsula image is an image of a shield with a lock in the center. The shield and lock are bronze and magenta.

Data Dignity Pledge

Download

Definitions: What do these words mean? 

Download

Meaningful Consent Checklist

Download

Data Dignity

Infographics

Visual charts that show how data is used to help people and how data is misused are available for download on this page.

Abstract Background

The De-Identified Data Blur: Is My Identity Really Protected?

Download

The Data Unblurring Pipeline

Download

More Infographics Coming Soon

These infographics are shown on the My Data. My Dignity. My Voice. page with alt text and explanations. 

Help Write a Data Dignity
Bill of Rights

Start thinking and talking about what Data Dignity and your rights mean to you today. 

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Feel free to share your thoughts in the Contact Form.

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Digital Frontier Alliance will compile and post a draft for feedback when we receive enough responses. 

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Please stay tuned for more information soon!

Contact State & Local Leaders

Please find links to contact information below.

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