How Families and Support Workers Can Share Care Information More Safely

Coordinating care requires sharing information.

But good care coordination does not mean everyone should automatically have access to everything.

A participant's support network might include:

• family members
• independent support workers
• provider staff
• support coordinators
• health professionals
• informal carers
• advocates
• other authorised people

Some of those people may need information about an appointment.

Some may need to know how the participant prefers to communicate.

Some may need health information relevant to their support.

Others may not need access to that information at all.

The aim should be:

Share the right information with the right people for the right reason.

Start with the participant

The participant should be central to decisions about their information wherever they have the capacity and authority to make those decisions.

NDIS Commission guidance encourages participants to consider what information they want workers to have and what they are comfortable with workers sharing with others.

Useful questions include:

• What does this worker need to know?
• Why do they need it?
• Who else should know?
• Is the participant comfortable with it being shared?
• Does this information still need to be available later?

Not every support worker needs every piece of information

Imagine four people support the same participant.

One worker provides community access.

One provides personal care.

One assists with meal preparation.

One provides occasional transport.

Their information needs may overlap, but they may not be identical.

A useful system should be able to distinguish between care coordination and unrestricted access.

Health information deserves particular care

Health information is sensitive.

Under the Privacy Act, health information handled in relevant circumstances is treated as sensitive information and attracts additional protections.

Privacy obligations can vary according to who is handling the information, what service is being provided and applicable Commonwealth, state or territory law.

So the safest general approach is not:

“Put everything in the group chat because everyone is on the care team.”

Instead ask:

“Does this person need this information to carry out their role or support the participant appropriately?”

Think carefully before using ordinary message threads as the permanent record

SMS and messaging apps are convenient.

They're familiar.

Almost everybody already knows how to use them.

The challenge is that they combine many different purposes into one stream.

A conversation might contain:

• medical information
• appointment details
• photographs
• jokes
• tasks
• worker availability
• addresses
• shift changes
• incidents
• care instructions

Six months later, finding one important instruction can require scrolling through hundreds of unrelated messages.

The information isn't necessarily lost.

But it's functionally difficult to retrieve.

Access should change when roles change

Support networks are rarely permanent.

Workers leave.

New workers join.

Family responsibilities change.

Providers change.

Someone who genuinely needed access six months ago may not need it today.

Good information management should therefore ask:

• Who currently has access?
• Why?
• Should they still have it?
• Can access be changed when their role changes?

Where APP 11 applies, OAIC guidance says organisations must take reasonable steps to protect personal information from unauthorised access, modification or disclosure and identifies access security among relevant safeguards.

Avoid unnecessary duplication

Every time sensitive information is copied into another system, message or personal note, another copy exists.

For example:

1. Family member receives a health update.
2. Copies it into SMS.
3. Worker screenshots it.
4. Another person forwards it into another chat.
5. Someone saves the screenshot.

Now the same information exists in several places with different access arrangements.

A better approach is often to maintain an appropriate source of truth and direct authorised people to the information they need.

Keep information accurate

Privacy isn't the only issue.

Incorrect information can also create problems.

Examples:

• an old medication remains on a list
• an emergency contact changes number
• an appointment time changes but the old one remains elsewhere
• an outdated care instruction keeps circulating
• a worker's personal note conflicts with the participant's current preferences

A central record is only valuable if it can be updated and people know which version is current.

Separate permanent information from temporary updates

This can dramatically improve care organisation.

Participant profile

Information that remains relevant over time.

Care update / handover

Something another person needs to know from a recent support.

Task

Something someone needs to do.

Calendar

Something happening at a particular time.

Document

A file that needs to be retained and accessed.

Emergency profile

A smaller set of information intended for an emergency context.

Trying to put all six into a chat thread makes retrieval harder.

Photographs need thought too

A photograph can contain sensitive information just as written notes can.

That could include:

• wounds
• medication
• medical equipment
• personal living spaces
• identifying information
• documents visible in the background

Before taking, storing or sharing an image, consider whether it is necessary, whether appropriate authority exists, who needs access and where it will be stored.

Be especially careful with personal devices

Independent workers often work from their own phones.

That makes practical security habits important.

Consider issues such as:

• screen locks
• shared devices
• automatic photo backups
• screenshots
• downloaded files
• cloud backups
• old information remaining after a support relationship ends

The exact legal requirements depend on the circumstances, but reducing unnecessary copies is a sensible privacy practice.

Participants should know where their information is

Care coordination shouldn't create a black box.

People should be able to understand:

• what information is being kept
• why
• who can access it
• where practical, how it can be corrected
• what happens when somebody leaves the care group

Transparency helps build trust.

Where Neume fits

Neume is being designed around participant-centred, role-based care coordination.

Instead of sending every piece of information to every person, Neume's goal is to give authorised care-group members appropriate access to the information involved in the participant's support.

Neume brings together areas such as:

• care updates
• schedules
• tasks
• participant information
• health information
• documents
• contacts
• care instructions
• messaging
• emergency information

The intention is to reduce the need for important care information to be repeatedly copied between unrelated tools.

Neume itself does not decide whether a particular person has legal authority to share another person's information. The people adding and sharing information still need the appropriate consent, authority or other lawful basis applicable to their circumstances.

A simple test before sharing care information

Before sharing something, ask:

Is it relevant?

Does this person genuinely need it?

Is it appropriate?

Is there appropriate authority or another valid reason for sharing it?

Is it accurate?

Could the information be outdated or incomplete?

Is this the right place?

Does it belong in a message, task, calendar, participant profile, document or emergency record?

Who will have access later?

Will people who no longer need it continue to have access?

Am I creating another unnecessary copy?

Could the information remain in one appropriate source instead?

Care coordination requires information to move.

Good care coordination makes that movement intentional rather than accidental.