BRIAN and your data

  • We treat your data with the utmost confidence and care
  • Our data policies were written to be in line with the GDPR and the Data Protection Act 2018
  • More information about data collection can be found in The Charity’s privacy policy
  • We collect data from you directly (details below)
  • We exchange data about you with our data partners (details below)
  • We combine and link these data sources where possible
  • We use this data to:
    • Help BRIAN do its job of tracking, sharing and comparing experiences of those coping with a brain tumour;
    • let The Charity perform analysis to guide its strategy and objectives; and
    • share with researchers, to speed up finding a cure for brain tumours
      • Please note: any researchers wanting to access our data go through a strict vetting and approval process
  • Some of this data can only be obtained if we have CAG (Confidentiality Advisory Group) approval from the Health Research Authority and so we are currently seeking such an approval. If granted, this would mean:
    • The data is fully identifiable; and
    • we don’t need your permission to obtain it; because
    • our purpose for using it, and the way we handle it, would be considered ethical & lawful by the appropriate governing body
  • We keep this data on servers accredited to ISO 27001 standards, located in the UK
  • We retain this data for 25 years, or for as long as is necessary to meet contractual, legal and regulatory requirements
  • Please note, that if there is a concern that you are at risk of harm to yourself or others, we may need to break confidentiality to take appropriate action
  • To be removed from BRIAN - contact us
  • To be removed from our partners’ data sets - contact our data partners
  • You may need to provide us with a small amount of personal data (e.g. full name, date of birth and NHS number) so that we can find and remove you from BRIAN
  • To request removal on someone’s behalf, e.g. if you are a parent or carer, please contact us and we’ll do our best to help
  • Your identifiable information will be removed entirely from BRIAN;
  • Some parts of your old data, which will now be considered anonymous, will remain in BRIAN; and
  • We will keep a record of your request for auditing purposes
  • Please note: our partners’ data sets will still hold some personal information about you; we have no control over the contents of these data sets
  • If you’d like to be removed from our partners’ data sets, you’ll need to contact our data partners directly
  • Once your request has been processed, we will no longer receive your data from the relevant data partner(s)
  • On our next data refresh (these are periodic, usually 2 or 4 times a year), your information will be updated and permanently removed from the BRIAN database
  • We’d be delighted to help if you want to be included in our database again – please contact us if this is the case.
  • User information (e.g. email, name, date of birth, geographic location)
  • Patient information (when not the same as the user, e.g. name, date of birth, NHS number, geographic location)
  • Medical information (e.g. tumour details, appointments and treatments, medications)
  • Patient-reported information (e.g. questionnaire responses, quality of life journals, etc)
  • Full details are available on request
  • Contact us and we will be more than happy to provide you a copy of the data we hold on you and how it links together with our data partners’ information
  • We will respond to these requests as quickly as possible, and within one calendar month
  • If you notice a mistake in the data we hold on you, contact us and we’ll do our best to correct it as per your instruction; however
  • Some corrections would need to be made by our data partners, in which case you’d need to contact them directly
  • We will respond to these requests as quickly as possible, and within one calendar month