Respecting privacy while keeping trusted helpers informed

What we found in the guidance

HHS consumer guidance reviewed February 3, 2025 (opens in a new tab) explains choices and rights concerning health information under HIPAA.

“You also have the right to know how your health information is used and shared.”

— US Department of Health and Human Services

The guidance addresses health information rights and health care organizations. It should not be read as saying that every family conversation or app is governed by the same rules.

For families, it prompts a related practical question: how can someone receive useful help while keeping a say in the information shared about them?

Why this matters to us

A relative offering transport may need the address and agreed time. They may not need a detailed account of the appointment. Another trusted person may have a different role and a reason to know more.

At genus, we think the size of a care circle should not determine the size of every audience. Sharing everything with everyone can become a habit before anyone has asked what the person wants.

Privacy is also personal. One person may welcome a broad family update; another may prefer to tell relatives themselves. Those preferences can change with the situation.

Agree on the audience before the update

Our suggestion is to ask three questions before sharing routine information: who needs it, what do they need for their role, and how does the person want it communicated?

For an upcoming visit, the family might agree that the transport helper receives practical details while a separate conversation handles personal questions. That agreement should be clear to whoever sends the message.

Check before adding another person to an existing discussion. Earlier messages may contain information that was intended for a smaller group. If the group cannot appropriately hold the update, use a different agreed method.

When dealing with a provider, ask the provider to explain its permission and access process. Helping with an errand does not, by itself, establish authority to make decisions or receive records.

Avoid guessing when someone’s wishes or authority are unclear. Ask the appropriate person or professional to clarify. The aim is a workable habit of thoughtful sharing, not another complicated task for the family.

The genus connection

Today, the genusConnect Care App (opens in a new tab) supports enabled conversations, events and tasks for invited community members. Features and access depend on the organization’s configuration.

Before posting, confirm who can see the information and whether that audience is appropriate. An invitation to a community does not settle every sharing decision. Our mission connection is helping trusted people coordinate while respecting the person whose life they are supporting.

One question to take away

Does your care circle know which updates the person wants shared, and with whom?