Imagine this: You're caring for a loved one and share a quick update about their health in a group chat with family. It seems harmless, but what if they didn't want that information shared? Understanding HIPAA is important for caregivers, even if you're not legally bound by it because protecting your loved one's privacy builds trust and avoids potential problems.
In this article, we'll explain how HIPAA applies to caregivers, common mistakes to avoid, and simple tips to protect sensitive health information.
HIPAA is the Health Insurance Portability and Accountability Act, a law designed to protect private health information. It ensures that sensitive details about a person's health, treatments, and medical records are kept confidential and only shared with authorized individuals.
HIPAA applies to "covered entities" (healthcare providers, health plans, healthcare clearinghouses) and their "business associates" (i.e., medical billing companies, IT providers managing health data, legal firms handling medical cases, or transcription services.) These individuals and organizations are legally required to follow HIPAA regulations to protect private health information (PHI).
Family caregivers are generally not considered covered entities or business associates. However, if a caregiver is employed by or contracted through a healthcare organization, that organization's HIPAA obligations might extend to the caregiver in some way.
The actions a family caregiver takes—like how you store medical records or share updates about your loved one's care—can still impact their privacy.
A HIPAA violation occurs when someone improperly accesses, uses, or shares protected health information (PHI).
Common violations may include:
The consequences of a violation for covered entities and business associates include financial penalties, criminal penalties, and reputation damage.
For caregivers, the consequences are more indirect, including emotional image and possible program repercussions for those in Medicaid waiver programs or working with healthcare organizations.
Most family caregivers are not directly bound by HIPAA because the law primarily applies to healthcare providers, health insurance companies, and other covered entities. However, even if HIPAA doesn't legally apply to caregivers, mishandling sensitive health information can still have serious consequences. Breaches of privacy can lead to emotional harm, loss of trust, and tension within caregiving relationships.
In some situations, family caregivers may work alongside home healthcare professionals or agencies that are HIPAA-covered entities. For example, a visiting nurse might require that all health-related information be handled in a HIPAA-compliant way.
If you believe a HIPAA violation has occurred, reporting it helps protect the privacy of identifiable health information and ensures accountability.
Anyone—patients, caregivers, employees, or the general public—can report a suspected HIPAA violation. You don't need to be directly affected to file a report.
Write down details of the suspected violation, including what happened (e.g., unauthorized access, sharing, or mishandling of health information), when and where it occurred, and names of individuals or organizations involved.
Start by reporting the issue directly to the healthcare provider, organization, or business involved. Many have a privacy or compliance officer to handle such concerns.
If the issue isn't resolved or involves a serious breach, you can file a complaint directly with the U.S. Department of Health and Human Services (HHS) Office for Civil Rights (OCR). Use the OCR's online complaint portal or submit by mail or email using the HIPAA complaint form available on the HHS website. Complaints must be filed within 180 days of the violation.
The OCR will review the complaint to determine if it involves a HIPAA-covered entity and if it is a potential violation.
If accepted, they may investigate the claim, which could lead to:
Caregivers should report violations if they notice improper handling of their loved one's health information or if a covered entity refuses to address patient privacy concerns. Reporting protects not only the individual involved but also others who may be impacted by the same practices.
Taking action can help uphold privacy standards and ensure health information is handled responsibly.
Caregivers can play an active role in ensuring the organizations they work with or interact with are set up to prevent HIPAA violations. By being proactive, you can help protect sensitive health information and ensure compliance.
Organizations that prioritize HIPAA compliance will have clear policies in place and provide regular training to staff. When working with an agency or healthcare provider, ask about their HIPAA training and privacy protocols.
Secure communication tools (e.g., encrypted emails, HIPAA-compliant apps) help protect private health information. Confirm that the healthcare facility or organization uses secure systems for sharing medical updates or storing patient records. Avoid working with agencies that rely on unsecured methods like texting or public email platforms specifically for PHI.
Proper storage of medical records is critical to prevent unauthorized disclosure of protected health information. Ensure the organization has secure storage systems for both electronic and paper records, such as password protection, locked cabinets, or encrypted patient files.
