How do I opt out of Health Information Exchange (HIE)?

To opt out of Health Information Exchange (HIE): (1) Identify which HIE networks operate in your state - there are 40+ separate HIE networks across the U.S., (2) Download the specific opt-out form for each HIE from their website or your healthcare provider, (3) Complete the form with your personal information and signature (some require notarization), (4) Submit via mail, fax, or through your provider as instructed, (5) Allow 10-15 business days for processing, and (6) Repeat this process for each state where you've received care. Note: You must opt out of each HIE separately. See our HIE Opt-Out Hub at /privacy-guide/hie-opt-out for complete state-by-state information.

Can I opt out of medical research studies using my health data?

Yes, you can opt out of medical research studies using your health data. To opt out: (1) Submit a written opt-out request to your healthcare provider's Privacy Officer or Research Department, (2) Request to opt out of future research participation, (3) Specify if you want to exclude identifiable data, de-identified data, or both, (4) Allow 30 days for processing. Note: If you've already signed research authorization forms, your opt-out may not apply retroactively to those specific studies. However, you can decline future research participation. Some quality improvement activities may be considered 'operations' under HIPAA and may not allow opt-out.

How do I stop healthcare marketing and fundraising communications?

To stop healthcare marketing and fundraising communications: (1) Submit a written opt-out request to your provider's Privacy Officer or Patient Relations department, (2) Specify what communications you want to stop (marketing, fundraising, newsletters, or all), (3) For emails, use the 'unsubscribe' link at the bottom of messages, (4) For phone calls, request to be placed on their 'Do Not Call' list, (5) For direct mail, request removal from their mailing list. This opt-out typically takes effect immediately for future communications. Under HIPAA, providers must honor your request to opt out of marketing and fundraising communications.

What are the different types of health data opt-outs available?

There are four main types of health data opt-outs: (1) Marketing & Fundraising Opt-Out - stops promotional communications (easy, immediate effect), (2) Research Participation Opt-Out - declines use of your data in medical studies (moderate difficulty, 30-day timeframe), (3) Health Information Exchange (HIE) Opt-Out - prevents automatic sharing between healthcare networks (moderate difficulty, 30-60 days, requires separate forms for each state HIE), and (4) Quality Improvement Opt-Out - excludes data from quality measurement programs (hard, 60-90 days). Each type has different processes, timeframes, and complexity levels.

Will opting out affect my medical care?

Opting out generally should NOT affect your medical care quality or access. Under HIPAA, providers cannot: (1) Deny you treatment for opting out of marketing/fundraising, (2) Require participation in research as a condition of treatment (except in limited research-based care), or (3) Retaliate against you for exercising privacy rights. However, opting out of Health Information Exchange (HIE) may mean: emergency providers won't have immediate access to your full medical history from other facilities, and coordination between specialists may require additional paperwork. Some providers may warn that HIE opt-out could impact care coordination, but you cannot be denied care for opting out.

Are opt-out forms different for each state?

Yes, opt-out forms vary significantly by state, especially for Health Information Exchanges (HIEs). Each state has different: (1) HIE networks - some states have 1 statewide HIE, others have 3-4 regional HIEs, (2) Opt-out processes - some allow online submission, others require mail/fax with notarization, (3) State-specific privacy laws - California (CMIA), Washington (My Health My Data Act), and other states have unique requirements, (4) Required documentation - some need just a signature, others require notary or provider verification. You need to use the specific forms for each state where you've received care. See our state-by-state directory with direct links to each state's forms and contact information.

Opt-Out Forms & Processes

Templates and step-by-step instructions for opting out of data sharing with various health organizations, from providers to data brokers.

Important: Opt-out processes vary by state and healthcare provider. Some sharing may be required by law and cannot be opted out of. Always consult with your healthcare provider's privacy officer for specific guidance.

Understanding "Opt-Out" vs Authorization

Learn the difference between proactive opt-out forms and traditional authorization requirements.

Opt-Out Forms

Proactive forms that prevent future sharing of your health information for specific purposes.

Prevents future data sharing
Usually applies to non-treatment purposes
Can often be reversed later
State-specific standardized forms available

Authorization Forms

Explicit permission forms required before sharing your health information for specific purposes.

Required before sharing occurs
Specific purpose and recipient required
Can be revoked at any time
Federally standardized requirements

Types of Standardized Forms Available

Common categories of opt-out forms and their specific applications.

Easy Immediate

Marketing & Fundraising Opt-Out

Stop receiving marketing materials and fundraising requests from healthcare organizations

Common Form Types:

Standard marketing opt-out form
Email unsubscribe
Phone call preference

Moderate 30 days

Research Participation Opt-Out

Decline participation in medical research studies using your health information

Common Form Types:

Research opt-out form
IRB notification
Future studies exclusion

Moderate 30-60 days

Health Information Exchange Opt-Out

Prevent sharing of your health information between healthcare networks

Common Form Types:

HIE opt-out form
Network-specific forms
State registry opt-out

Hard 60-90 days

Quality Improvement Opt-Out

Exclude your data from quality improvement and performance measurement programs

Common Form Types:

QI program opt-out
Performance measure exclusion
Accreditation opt-out

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Examples: What to Look For by State

These examples show the types of resources and contact information you should seek when researching opt-out forms in your state. Each state may have different agencies, forms, and processes.

Important: The examples below are for illustration purposes. Contact information and available forms change frequently. Always verify current resources and contact information through official state health department websites or by calling directly.

California Example

Standardized Forms

Types of Resources to Look For:

916-558-1784 (CA Dept of Public Health)

New York Example

Standardized Forms

Types of Resources to Look For:

[email protected] (NYeC - SHIN-NY)

Texas Example

Types of Resources to Look For:

512-776-6502 DSHS • 512-797-6503 THSA

Florida Example

Types of Resources to Look For:

850-412-3740 (AHCA)

Illinois Example

Types of Resources to Look For:

Contact your local health department

How to Find Your State's Privacy Resources

Start Here:

State Department of Health website
State HIPAA privacy office
Health information exchange coordinator
State health information technology office

Federal Backup:

HHS Office for Civil Rights
1-800-368-1019 for HIPAA complaints
State Attorney General Office
Often handles state privacy law violations

Don't see your state listed? Many states are developing standardized opt-out processes. Start by contacting your state health department's privacy office.

View Complete State-by-State Rights

When No Form is Needed

Important situations where opt-out forms may not apply or be overridden.

Emergency Treatment

In emergency situations, opt-out preferences may be overridden for treatment purposes

Required by Law

Legal requirements (court orders, public health) override opt-out preferences

Treatment, Payment, Operations

Core healthcare functions (TPO) generally don't require additional consent forms

Already Authorized

If you previously signed authorization forms, opt-out may not apply retroactively

Practical Action Steps

Step-by-step guide to successfully opting out of PHI sharing.

⚠️ This process typically takes 2-6 months when done yourself. Missing deadlines can reset the entire process.

Identify What You Want to Opt Out Of

Review your current healthcare providers and determine which types of sharing you want to restrict

Action Items:

Review privacy notices
List all healthcare providers
Identify specific concerns

Check State-Specific Requirements

Determine if your state has standardized opt-out forms or processes

Action Items:

Check state health department website
Contact state privacy office directly
Verify all contact information and links
Review state HIE opt-out options

Contact All Relevant Organizations

Reach out to healthcare providers, health insurance companies, data brokers, and health information exchanges to request their specific opt-out forms and processes

Action Items:

Verify current phone numbers and contact information
Call privacy officers at each organization
Request forms from providers, insurers, HIEs, and data brokers
Confirm which forms are currently required
Document all communications

Submit Forms and Follow Up

Complete and submit all necessary forms, then verify your opt-out preferences have been recorded

Action Items:

Submit completed forms
Request confirmation
Verify in patient portal
Keep copies of all documents

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Real experiences from customers who trusted us with their opt-out process

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Texas

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Related Resources

Explore additional privacy rights and resources.

Exercise Your Rights

Step-by-step guides for exercising all your HIPAA rights

State PHI Rights

State-by-state breakdown of additional privacy rights

Legal Framework

Understanding the laws that protect your health information

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