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An update about our BRIAN app 

After extensive evaluation, we’ve made the difficult decision to decommission the BRIAN app.  

This means that after 27 August 2024, the app will no longer be supported.   

We’re extremely proud of what we’ve achieved with the BRIAN app and we wouldn’t be able to say that without the support of the incredible brain tumour community and everyone who has worked on it.  

We believe that by redirecting these resources elsewhere, we can move further, faster in achieving our goals – accelerating new cures for brain tumours, driving the best life-long care and raising our voices as a community. 

If you have further questions about why we’re decommissioning BRIAN, you can contact the team by email

What will happen to my data? 

In line with regulations around the storage of data, you’ll be able to download your data from the app between today 29 July and 27 August 2024.   

It’s important to note that after 27 August 2024, you’ll no longer be able to download your data as will have  to delete this data to comply with data governance guidelines.   

You can access the portal to download your data using the button below.

Access the portal

To find out more about how to download your data from BRIAN, you can watch this video. 

If you have a carer, family or Healthcare Professional account, you won’t be able download the data of any BRIAN users you’ve been caring for.  You’ll need to contact the BRIAN user you’re caring for so that they download the data using their account. You are able to request a copy of the data using our Subject Access Request process. 

Alternatively, you can click the drop-down below for a step-by-step guide on how to download your data. 

  • 1. Click this link to go to the portal
  • 2. Enter the email that you use to log into BRIAN
  1. 3. You’ll receive an email with the subject line “BRIAN one-time password”. This contains your one-time password to log in to the portal
  2. 4. Copy the password, paste it into the portal and click “log in” to enter the portal
  3. 5. Select which data you’d like to keep
  4. 6. Select which format you’d would like to receive your data in
  5. 7. You can also request additional data like selfies and speech files by telling us in the text box
  6. 8. Click export and you’ll receive a second email with the subject line “Password for data export”. This contains the password you need to download your data.
  7. 9. Copy and paste this password
  8. 10. You’ll receive a third email with the subject line “Download link for data export”. Click the button in this email and the data will download to your computer
  9. 11. Open the file on your computer and use the password you copied from the second email (with the subject line “Password for data export”) to open the file.
  10. 12. This file contains the data you requested from BRIAN.

FAQs

To meet our data protection requirements, BRIAN users can only download their own data directly.

BRIAN users with a Carer or Healthcare Professional account, can request a copy of the data of somebody they care for through our Subject Access Request (SAR) procedure. This process requires either the explicit consent of that person or legal documentation, such as a Lasting Power of Attorney for Health and Welfare, to confirm that they have consent to access the data.

If you have any questions about this process or need to submit a Subject Access Request, please use this form and email it to DPO@thebraintumourchairty.org who can advise on the next steps.

Our commitment to keeping your personal data safe and secure remains a top priority and we’re here to support you through this change. Your personal information will be used only to manage the app’s decommissioning.

Throughout the decommissioning process, we’ll provide you with important updates and instructions by email. To comply with our strict privacy policies and data protection regulations, you won’t receive marketing emails from The Brain Tumour Charity unless you’ve previously opted in to these communications. However, you may still receive communications by post if you haven’t previously opted out of these.

If you’d like to opt out of marketing communications from The Charity, you can do so by contacting our Central Operations team by emailing enquiries@thebraintumourcharity.org or calling 01252 237792.

We know that many BRIAN users felt very supported through using the app. Our Support and Information team are available to chat to anybody who needs to talk following this news. You can email them Monday to Friday from 9am until 5pm at support@thebraintumourcharity.org or call 0808 800 0004. 

Anybody affected by a brain tumour diagnosis can still make use of our comprehensive range of Support and Information services – all of which can be found here. 

If you’re looking for new ways to do some of the things that you previously did in BRIAN, we recommend joining one of our Online Brain Tumour Support Groups and starting a discussion about what other apps or services the community finds useful.