We asked participants to share what they think people should use their data for.

Participants told us their data should help the disability community.

And people with disability should be involved if this happens.

Participants explained that data can make it easier to plan supports.

For example, you might only need to share your information one time.

But participants wanted choice and control about sharing their own data.

Participants told us sharing their data can help them get supports they need.

Participants explained that researchers also use data to make disability services better.

They also shared that data can help work out:

• if programs are working well

• what services need more funding.

Funding is money from the government.

Participants also shared that people need to collect stories from people with disability to support the data.

We also asked participants to share what they think their data shouldn’t be used for.

Participants don’t want their data to be used against them.

For example, using their data to make people with disability look bad.

And they said the NDDA must manage their data carefully.

Participants explained that providers shouldn’t use data to choose one type of service they think will help all people with disability.

They want providers to think about what each person needs.

Participants also said people with disability should be part of making decisions about collecting and using data.

And some participants explained that data shouldn’t be used to take advantage of people with disability.

One participant explained that data must be used well to make sure people don’t use it to say bad things about people with disability.

Another participant said they worry about people collecting and sharing information that wasn’t helpful.