Privacy of communication data

Also called AAC privacy, Data privacy, Message logging, Data logging

What a device or app stores about what you say, where it sends it, and who can read it. The answer is often more than the person was told.

What it is

Everything a person says through a communication aid passes through software, and software can keep a copy. Some aids log every message with a time stamp, for therapists to review or to improve prediction. Some send text to a server to be turned into speech, or to a cloud service for prediction, sync or backup. Some are tied to an account whose terms allow the company to use the data.

The words a person speaks through their device are as private as the words anyone else says out loud. More so: they are written down.

Who it can help

Every AAC user, and especially those who cannot easily check for themselves what the device is doing: children, people with a learning disability, people in care homes whose device is set up by staff. It matters acutely for adult vocabulary, relationships, health, complaints and saying no: a person who suspects their messages are read by carers will not say those things, and then the record shows they "never raise concerns".

Logging is not always wrong. A therapist reviewing message history with the person's consent can improve their vocabulary. The test is consent, and the person's, not the family's or the school's.

How it works

Under UK data protection law, what a person says through an aid is their personal data, and where it concerns health, sex life or beliefs it is special category data with stronger protection. Anyone storing or processing it needs a lawful basis, must tell the person what is collected and why, and must let them see it and have it deleted. The Information Commissioner's Office enforces this, and a person or their advocate can complain to it.

In practice, look for four things in an app or device: does it log messages, and can logging be turned off; does speech leave the device (online voices, cloud prediction, sync); is there an account, and what do its terms allow; and who else has access, whether a therapist portal, a parent dashboard or a school admin. An app with no account, no server and no logging has nothing to answer for.

Getting started

This week, find the answers to those four questions for the person's aid, in the privacy settings and the privacy policy. Turn off message logging unless the person has agreed to it for a reason they understand, and ask for any logs that exist to be shown to them and, if they wish, deleted.

Then have the conversation with the person: who can see what you say on this? Agree it, write it into the communication passport, and repeat it when carers change. If a service refuses to answer or to delete, the Information Commissioner's Office takes complaints from the public.

Where to get help

Your AAC service can explain what the supplied device logs and how to change it. Disability Rights UK and the Equality and Human Rights Commission cover the rights side, an independent advocate can raise it on the person's behalf, and the Information Commissioner's Office handles complaints about how personal data is handled.