Dopamine Justice Alliance

1. Who we are

Dopamine Justice Alliance (“we”, “us”, “our”) is a UK‑based [charity / social enterprise – insert legal form and registered number once confirmed]. We support people affected by the compulsive side effects of dopamine agonist drugs and their families, and we campaign for justice and improved clinical standards.

We are the “data controller” for the personal information described in this policy, meaning we decide how and why it is used.cfg

2. What information we collect

Depending on how you interact with us, we may collect:

Contact details: name, postal address, email address, telephone number and preferred contact method
Demographic details: age range, general location (e.g. town/city, region), relationship to the person affected
Case information: narrative accounts of your experiences, timelines, copies or extracts of medical, hospital, GP, mental health, dental and social care records, financial records linked to compulsive behaviours, and other documents you choose to share
Technical information: IP address, browser type, and basic website usage data (via cookies or similar tools)
Communication records: emails, notes of support sessions, Zoom or other call details, and, where you agree, recordings and transcripts of interviews

Much of the case information you choose to share will be “special category data” (for example, health data, mental health information and details of criminal or alleged criminal conduct), which is given additional protection under UK law.resourcecentre

3. How we use your information and lawful bases

We only use your personal information where we have a lawful basis under UK GDPR. For Dopamine Justice Alliance this will usually be:tozers

Consent:
- Providing one‑to‑one emotional support
- Collecting, storing and analysing your case information (including records you share)
- Recording and transcribing Zoom or other calls
  You can withdraw consent at any time using the contact details in section 10.
Legitimate interests:
- Running and improving our support services
- Maintaining secure systems, preventing abuse and responding to complaints
- Producing aggregated, anonymised insights to support our campaigning and legal exploration, as long as this does not unfairly impact your rights
Explicit consent (special category data):
- Handling your health information, mental health information and other highly sensitive details
- Using anonymised or pseudonymised case material to evidence the dopamine agonist scandal or to explore group/class actions
Legal obligations:
- Complying with safeguarding duties, court orders or requests from regulators such as the Information Commissioner’s Office (ICO)cfg
- Responding to data protection complaints, as required by the Data Use and Access Act 2025wrigleys

We will never use your information for fundraising or marketing without a clear legal basis and an appropriate opportunity to opt out, in line with UK data protection and electronic marketing rules for charities.russell-cooke+1

4. How long we keep your information

We keep personal information only for as long as it is reasonably necessary for the purposes described above, including for legal or regulatory reasons. Broadly:resourcecentre

Support enquiries with no ongoing case record: normally up to 2 years after our last contact
Active case files (including documents you provide): for as long as we are actively supporting you or your family, then usually 6 years after the end of support (to allow for legal limitation periods)
Aggregated, fully anonymised information: may be kept for longer, because it can no longer be linked back to you

You can ask for your information to be deleted sooner in some circumstances (see section 8).

5. Who we share information with

We treat your information as confidential and will not sell it to anyone.

We may share limited information with:

Trusted service providers who help us deliver our services (for example secure email, cloud storage, case‑management or video‑conferencing providers). They must follow our instructions, keep your data secure and comply with UK data protection law.resourcecentre
Partner organisations we signpost you to, but only with your explicit consent (for example, when you ask us to make a warm referral).
Legal advisers or potential legal representatives, if you ask us to explore group or class action options and consent to relevant case information being shared.
Regulators, safeguarding bodies or law‑enforcement, where we are legally required to do so or where we consider there is a serious risk of harm that justifies disclosure.

If we ever transfer information outside the UK, we will only do so where there is an adequate level of protection or appropriate safeguards in place, in line with UK GDPR.ico

6. How we keep your information secure

We use a combination of technical and organisational measures to protect your information, including:

Encrypted storage for digital records and case files
Access controls and role‑based permissions so that only authorised people can view sensitive information
Secure disposal of records when they are no longer needed
Regular password and security reviews, and policies for staff and volunteers on confidentiality and data protection

No system can be completely secure, but we aim to follow recognised good practice for UK charities and community organisations.cfg+1

7. Your rights

Under UK data protection law, you have the following rights in relation to your personal information:ico+1

Right of access: to ask for a copy of the information we hold about you
Right to rectification: to ask us to correct inaccurate or incomplete information
Right to erasure: to ask us to delete your information in certain circumstances (for example, where we are relying on your consent and you withdraw it)
Right to restrict processing: to ask us to limit how we use your information
Right to object: to object to certain uses of your information, including where we rely on legitimate interests
Right to data portability: to receive information you have provided to us in a portable format, where the law requires this

These rights are subject to some conditions and exemptions; for example, we may need to retain certain records for legal, safeguarding or regulatory reasons.ico

8. Cookies and website analytics

Our website may use cookies or similar technologies to improve how it works and understand how people use it. Where cookies are not strictly necessary, we will ask for consent or give you clear options to control them, in line with ICO guidance.ico

9. Complaints and contact details

If you have any questions about this policy or how we use your personal information, or if you want to exercise any of your rights, you can contact us at:

Email: [insert dedicated privacy email]
Post: [insert postal address]

We will respond to data protection complaints through our internal complaints process, as required by the Data Use and Access Act 2025. If you are not satisfied with our response, you have the right to complain to the Information Commissioner’s Office (ICO) at www.ico.org.uk.[2]cfg

10. Changes to this policy

We may update this privacy / data protection policy from time to time, for example to reflect changes in the law or our services. The latest version will always be available on our website, with the date of the most recent update clearly shown.ico

This draft should be treated as a strong starting point, but it is advisable to have a UK solicitor or data‑protection specialist review it, especially given the sensitivity of the records and the emerging 2025 changes for charities.

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