Should informal caregivers be HIPAA compliant?

Informal caregivers are those who provide unpaid medical care for another individual. Informal caregivers are not required to be HIPAA compliant; however, understanding HIPAA privacy laws and how they relate to caregiving duties ensures that sensitive patient information is protected.

Who does HIPAA apply to?

The Health Insurance Portability and Accountability Act (HIPAA) was enacted to safeguard sensitive patient health information from being disclosed without the patient's consent or knowledge. HIPAA primarily applies to:

Covered entities

• Healthcare providers: Doctors, nurses, hospitals, and clinics.
• Health plans: Insurance companies, HMOs, government health programs.
• Healthcare clearinghouses: Entities that process nonstandard health information into standard formats.

Go deeper: What is a covered entity under HIPAA?

Business associates

Individuals or organizations that perform services on behalf of covered entities and have access to protected health information (PHI), including billing companies, IT service providers, and others.

Go deeper: How to know if you’re a business associate

Informal caregivers and HIPAA 

Informal caregivers do not fall under "covered entities" or "business associates." Therefore, they are not legally obligated to comply with HIPAA regulations. The law was designed to regulate formal healthcare providers and the organizations that support them, not individuals providing unpaid care in a private setting.

However, if a patient signs an authorization form, they can grant their caregiver access to their medical information. In this case, “HIPAA’s Privacy Rule restricts a family member’s access to a loved one’s medical information unless that family member has been named as a personal representative with a valid healthcare power of attorney (POA),” says Senior1Care.

The importance of privacy in informal caregiving

While HIPAA may not apply, maintaining the privacy of the person in your care is still necessary to safeguard their PHI. Caretakers should be cautious about sharing and handling medical information. Privacy is not just a legal matter—it's about respecting the dignity and autonomy of the person in your care.

Best practices

Although not legally required to follow HIPAA, adhering to some of HIPAA’s principles can help ensure quality care is provided while protecting sensitive information. Here are some best practices:

• Limit sharing of health information: Only share the health information of the person you care for with those who need to know, including other family members or healthcare providers who are directly involved in the individual’s care.
• Use secure communication channels: When discussing health information, especially electronically, use secure methods. Text messages, emails, and other forms of digital communication should be handled with care, and encryption should be used whenever possible.
• Ask for consent: Always ask for the consent of the person you're caring for before sharing their health information with others. 
• Store health information safely: Keep any medical records, prescriptions, or other sensitive documents in a secure location. If this information is stored digitally, ensure it is password-protected.

See also: HIPAA Compliant Email: The Definitive Guide

When does HIPAA apply to informal caregivers?

There are certain situations where HIPAA might become relevant for informal caregivers. For example, if you are working closely with a healthcare provider, such as by helping manage medical appointments or accessing health records, the provider might require you to follow certain HIPAA guidelines. In these cases, the healthcare provider will typically offer the necessary training and instructions to ensure compliance.

FAQs

What is the difference between a covered entity and an informal caregiver?

A covered entity includes healthcare providers, health plans, and healthcare clearinghouses, all of whom are required to comply with HIPAA. Informal caregivers, who are unpaid individuals providing care in a private setting, do not fall under this category and are not legally required to comply with HIPAA.

What are the risks of not protecting health information as an informal caregiver?

Failing to protect health information can lead to breaches of privacy, which may cause emotional distress, harm to the patient’s reputation, or even legal consequences in some cases. It can also damage the trust between the caregiver and the person receiving care.