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Privacy Statement Appendix 1

What information we collect

We collect or use the following information for research or archiving purposes as part of public interest research:

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  • Personal and health information used for the purpose of research, such as lived experience, disability status.

  • Records of consent, where appropriate

  • While we do not collect names directly, ISBNs allow us to link information to a book, which may identify the creator.

Use of Book Creator information

Information provided by book creators will offer Reflecting Disability insights into how lived experience and/or research impacts the representation of disabled people. Discussions about book creators in the report will be in terms of overall trends rather than individual experiences. We may also share general insights such as the balance of, for example, non-disabled, physically disabled, neurodivergent creators.

Confidentiality of Book Creator information

If we wish to quote or refer to any potentially identifying information, we will seek additional permission by contacting book creators via publishers.

How insights are shared

Findings will subsequently be published in the Reflecting Disability report, available online and in limited print quantities. Key insights may also be shared discussions about the report such as in media discussions, conferences, social media, and articles. Readers may quote or cite the report in their own work or public discussions.

How long we keep information

Data will be stored securely on Google Drive for the duration of the review process, which is expected to last 4-6 months. After this period, data will be retained on password-protected local computers for archival and research purposes but book creators may request deletion at any time.

 

​Please also see our Data Retention Policy

Additional information on data storage and deletion

Google Forms and Sheets are used due to their accessibility for people with specific access requirements, which is essential to this project. These files will remain in Google Drive for the review process, allowing named reviewers (under data protection agreements) to access them.

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After the review is complete, files will be downloaded by project facilitators and stored on password-protected local computers. The files on Google Drive will then be permanently deleted.

Your rights

You have the right to access, correct, or request deletion of any personal data related to you. To do so, please contact us at info@reflectingdisability.co.uk.

Last updated

3 February 2025

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