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Start with these questions
You can use this list with a doctor’s office, health plan, hospital, patient portal, app developer, or wearable company. Ask for clear answers about the information and the organization handling it.
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- What information do you collect, create, or receive about me?
- Why do you use it—for treatment, payment, health care operations, research, quality improvement, marketing, or another purpose?
- Who inside your organization can see it, and which outside organizations or people receive it?
- What information goes to each recipient? Is any information sold or used for advertising?
- Which uses or disclosures can happen without my authorization, and which require my written permission?
- How long do you keep the information, where is it stored, and what safeguards protect it?
- How can I request access to my information, a copy, a correction, or deletion where available?
- Who should I contact with a privacy question, complaint, or suspected breach?
- Do state laws give me additional protections?
Who is handling the information, and does HIPAA apply?
HIPAA’s Privacy and Security Rules apply to covered entities—such as health plans and most health care providers—and their business associates when they handle protected health information. They do not automatically cover every company that collects health-related data. Many personal-use apps fall outside HIPAA; an app may be covered in one arrangement when it is provided by a covered entity or business associate, but not when it operates independently. Ask who operates the service and in what capacity. See HHS guidance for consumers and ONC guidance on health apps.
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Which uses may happen without asking you first?
HIPAA allows certain uses and disclosures under defined conditions, including for treatment and care coordination, payment, health care operations, and some public-health purposes. It is not accurate to assume that every transfer requires your consent, or that all health-information sharing is prohibited. The permitted purpose, recipient, and legal conditions matter. Ask the organization to explain which rule applies to the specific use. ONC’s overview of health-information privacy describes patient rights and common permitted uses.
Many marketing uses and sales of information by covered entities generally require written authorization, subject to applicable rules and exceptions. If an organization asks you to sign an authorization, make sure it identifies who may use or disclose the information, what information is covered, who will receive it, the purpose, and when the authorization expires. HHS says authorization language should be understandable: “If people can’t understand it, it is not effective.” Read the HHS marketing guidance and HHS authorization guidance.
What to check before using a health app or wearable
Review the app’s privacy policy and terms before entering sensitive information or connecting it to a portal, device, or other service. Look for direct answers to these questions:
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- Can the developer use, share, or sell information without your permission? Is data used for targeted advertising?
- Is information stored on your device, on the developer’s servers, or somewhere else? How is it protected, including whether it is encrypted?
- Can you control what is collected or shared, download your information, or delete it? What happens when you close your account?
- Does the app explain how to view, store, download, and share information securely?
ONC’s health-app guidance recommends looking for a readable privacy policy and clear information about access, exchange, sale, storage, security, and user controls. Its advice is straightforward: “If it does not, keep looking for one that does.” A privacy policy is useful only if it explains what actually happens to your data; do not treat an app’s health focus or connection to a provider as proof that HIPAA applies to every data flow.
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Ask specifically about family and caregiver access
A provider may share information relevant to a family member’s or caregiver’s role in your care or payment if you do not object. You can tell the provider not to share it. Ask what information that person can see, how access is granted, and how to limit or revoke it. For details, see HHS guidance on family members and friends and its guidance on sharing information with people involved in a patient’s care.
Independent reader supportYour contribution helps us test, update, and keep practical guides available for everyone.What you can do if you need answers or have a concern
Patients have rights to learn how their information may be used and to exercise applicable HIPAA rights. If a covered organization denies a right or you believe information was not protected, ask for its privacy contact and complaint process; you can also file a complaint with HHS. State law may provide additional protections. Start with HHS’s HIPAA complaint guidance and check your state’s relevant health privacy rules.
When an answer is unclear, ask the organization to identify the data, purpose, recipient, legal basis or permission, retention period, and available choices for the specific use you are concerned about. Keep a copy of the privacy notice or authorization you relied on.
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