Privacy Notice: Long-Term Conditions Study

Last updated 19.11.2025

This notice explains how Ellia collects and uses your personal information when you take part in our “Understanding Everyday Life With a Long-Term Condition” study. It should be read alongside our main Privacy Policy at www.ellia.org.uk.

Who we are

Ellia is the trading name of COMMUNITY SUPPORT SOLUTIONS LTD (16437222), a company registered in England and Wales.

  • Registered address: 1–11 Alvin Street, Gloucester, GL1 3EJ

  • Email: hello@ellia.org.uk

  • Phone: +44 (0)1452 447 109

Ellia provides non-medical in-home support and companionship services across Gloucestershire.

What information we collect

If you register and take part in this study, we may collect:

  • your name

  • your email address

  • your phone number (if you choose to provide it)

  • the general category of your long-term condition (from the dropdown list)

  • notes taken during your conversation with us

  • confirmation that we have seen evidence of your diagnosis (we will not keep a copy of any letter or document)

We will not ask you to upload scans, letters, or other medical documents.

Special category data

Information about your health is classed as special category data under UK GDPR. We only process this data with your explicit consent, which you give by completing the online consent form.

Why we collect your information

We use your information to:

  • confirm your eligibility to take part

  • contact you to arrange a short phone or video call

  • understand your experience of living with a long-term condition

  • develop and plan non-medical support services

We do not use this information to make automated decisions about you, and we do not use it for marketing without your separate consent.

Legal basis for processing

Our legal basis under UK GDPR is:

  • Article 6(1)(a) – your consent

  • Article 9(2)(a) – your explicit consent to process health-related (special category) data

You can withdraw your consent at any time by contacting us at hello@ellia.org.uk.

How we store your data

We store your data:

  • in secure, password-protected systems

  • with access restricted to authorised staff involved in the study

  • in the UK, or in services that meet UK GDPR requirements

We do not store any copies of medical documents.

How long we keep your data

  • Your identifiable information (name, contact details and linked notes) will be kept for up to 90 days after your interview.

  • After this, your responses will be kept in anonymised form only for research and service design purposes.

Who we share your information with

We do not sell or rent your data.

For this study, your information will only be accessed by Ellia staff who are directly involved in the research and who are bound by confidentiality.

We may share information if required by law, for example with regulators or authorities.

Your rights

Under UK GDPR, you have the right to:

  • access the personal data we hold about you

  • ask us to correct inaccurate information

  • withdraw your consent at any time

  • ask us to delete your data (where applicable)

  • complain to the Information Commissioner’s Office (ICO) if you are unhappy with how your data is handled – www.ico.org.uk

To exercise your rights, please contact us at hello@ellia.org.uk.