The Tool Desk
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What should I do first?
- Verify that the notice is genuine. Sign in through a portal you already use, or independently find the organization’s official website or phone number. Do not click an unexpected link or give sensitive information to an unverified caller. Ask to speak with the incident-response contact.
- Ask what the investigation found. Find out which categories of data were involved, when the incident happened and when it was discovered, whether there is evidence of access or copying, whether the organization has identified misuse, and what specific protective steps it recommends. Ask how to receive updates.
- Check your health records and insurance activity. Review records from your providers, pharmacies, laboratories, and health plan. Look for unfamiliar appointments, prescriptions, claims, bills, or benefits that appear to have been used.
- Dispute suspicious activity promptly. Contact the provider or insurer connected to an unfamiliar entry or claim. Keep copies of the notice, bills, explanations of benefits, correspondence, and case numbers. If someone used your personal information or insurance benefits to obtain care or prescriptions, use IdentityTheft.gov to create a recovery plan.
What should I ask the organization?
A notice may identify broad categories of information without resolving every question about what happened. Ask the organization to clarify the details that affect your next steps:
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- Was information such as my name, contact details, diagnoses, prescriptions, insurance information, or payment data involved?
- What are the incident date and discovery date?
- Does the investigation indicate that information was accessed or exfiltrated, or does it establish encryption only? What is known, and what remains uncertain?
- Has the organization found evidence of misuse related to my information?
- What protective steps does it recommend for the specific information involved?
- Who is the contact for questions, and how will I receive updates if the findings change?
When you receive a later update, compare it with the first notice: check whether the data categories, findings about access or exfiltration, recommended steps, contact details, or stated timelines have changed.
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Encryption and exfiltration are different: ransomware can make files inaccessible by encrypting them, while exfiltration means information was copied or taken out of the affected system. A notice that says an organization was hit by ransomware does not establish that every record was publicly posted or copied.
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Under HHS guidance, when ransomware encrypts electronic protected health information (ePHI), HIPAA treats the event as a presumed breach because an unauthorized person acquired or controlled the information. The organization can rebut that presumption only by showing a low probability that the information was compromised through the prescribed risk assessment. That legal presumption is not the same as a finding that every record was exfiltrated; the organization’s investigation determines the incident’s scope.
How can I tell if someone used my health insurance?
Look for care or prescriptions you did not receive, unfamiliar claims or bills, and benefits that appear to have been used without your knowledge. Request or inspect records from the relevant provider, pharmacy, laboratory, and health plan. If you find an error, contact the organization that created the record and your insurer to report and dispute it. Keep the related paperwork and case numbers together so you can track the dispute.
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Does HIPAA cover the health app or company involved?
Not necessarily. HIPAA applies to covered entities and their business associates; a consumer health app or service is not automatically covered just because it holds health information. The FTC Health Breach Notification Rule applies to certain vendors of personal health records and related entities outside HIPAA. Which route applies depends on the organization and its role, not simply on whether the data is medical.
You can report concerns about health-information practices to the FTC. Required breach reports, however, are the regulated organization’s responsibility; patients do not file the organization’s HHS breach report. State breach laws and individual rights can vary by location, so consult state-specific guidance if you need to understand protections beyond the federal rules.
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When should a HIPAA breach notice arrive?
For a breach of unsecured protected health information covered by HIPAA, affected individuals must be notified without unreasonable delay and no later than 60 days after discovery. The notice should describe the breach and the information involved, explain protective steps, summarize the organization’s investigation and mitigation, and provide contact information.
For a breach affecting 500 or more people, the covered entity must also notify HHS without unreasonable delay and within 60 days. For breaches affecting fewer than 500 people, it reports to HHS annually, within 60 days after the calendar year ends. These are duties of the covered organization; they do not require a patient to submit the organization’s report.
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What a large breach can—and cannot—tell you
HHS’s Change Healthcare FAQ reported that approximately 190 million individuals were impacted and approximately 130 million individual notices had been sent as of January 24, 2025. Those figures describe that specific incident at that date; they do not estimate the general likelihood that a ransomware attack exposed a particular patient’s records or indicate what information about you was involved. Your own notice and the organization’s investigation are the relevant sources for your case.
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