Believe Pain is committed to protecting the privacy of everyone who visits this site or shares a story with us. This policy explains what information we collect, why we collect it, how it is stored, and what rights you have over it.
This policy applies to all visitors to believepain.co.nz, including visitors based in the European Union, whose data protection rights under the General Data Protection Regulation (GDPR) we also aim to meet.
A note before you read on: this policy was written with care, but it is not a substitute for legal advice. If you have questions about your rights, or if something here is unclear, please contact us using the details below.
Who we are
Believe Pain is an advocacy initiative based in Christchurch, New Zealand.
Contact: admin@believepain.co.nz
What we collect through the Share Your Story form
When you submit a story, we may collect:
- Your written story
- Your age range, gender, and ethnicity, if you choose to share them (these fields are optional)
- Your general location (for example, city or region)
- Your email address or phone number, if you choose to give us a way to reach you
You are never required to complete the optional fields. The only thing we need is the story itself.
Why we collect it
We collect this information for three distinct purposes, and we ask for your consent to each separately:
- To read and understand your experience. This happens regardless of whether you consent to publication.
- To publish an anonymised version of your story on the Believe Pain website, if you give consent.
- To use your story in wider advocacy work, such as social media, presentations, media engagement, or campaign materials, if you give separate consent for this. Consenting to website publication does not automatically include this.
If, in future, stories are used to inform academic research (for example, as part of a university dissertation), that will always require its own, separate consent process and will go through formal ethics approval first. It will never be treated as covered by consent given for the campaign.
What happens if you do not consent to publication
If you choose not to have your story published, it is read privately and is never shared, published, or used in any campaign material. It is not stored on the Believe Pain website. It exists only in the private inbox where submissions are received, and is deleted according to the retention schedule below.
How we anonymise stories before publishing
Before a story is published, we remove or generalise anything that could identify you, including:
- Your name
- Names of specific health professionals, clinics, or hospitals
- Specific locations, if the combination of details (for example, a small town plus a rare diagnosis) could make you identifiable, even without your name
New Zealand is a small country, and we take the view that a combination of seemingly minor details can still identify someone. Where there is a real risk of this, we will generalise or omit details even if you did not ask us to.
We may lightly edit your story for length or clarity. If you provide us with your contact details, you can request to be able to review the final published wording before it goes live.
Legal basis for processing
Because your story may include health information, and sometimes ethnicity, this is treated as special category data under GDPR. We rely on your explicit, informed consent as the legal basis for collecting, storing, and using this information. You may withdraw this consent at any time (see Your Rights, below).
Where your story is stored
- Submissions are sent to a private email inbox.
- If you consent to publication, the final published version of your story is stored on the Believe Pain website. No other submission data (your email address, unedited draft, demographic details) is stored on the website itself.
- We do not use third-party analytics or advertising tools to track story submissions.
How long we keep your information
- Unpublished stories: retained for 3 months, then permanently deleted, unless you ask us to delete them sooner.
- Published stories: retained on the website for as long as Believe Pain operates, or until you ask for removal.
- Contact details, if provided: retained for as long as you have given consent for us to hold them. If you consented to being recontacted about research use, we retain your contact details until that consent is withdrawn or the research project concludes, whichever comes first. You can withdraw this consent, and ask us to delete your contact details, at any time.
Who else sees your information
Your submission passes through the following services in order to reach us:
- WPForms, the form plugin used on this website
- EmailOctopus, where submissions are received
- Namecheap, which hosts the Believe Pain website
These providers process data on our behalf and do not use it for their own purposes. Some of these providers operate servers outside New Zealand and the European Economic Area (commonly in the United States). Where this applies, we rely on the safeguards each provider has in place for international data transfers (such as standard contractual clauses).
We do not sell, rent, or trade your information to anyone, under any circumstances.
The limits of what we can control once a story is published
If you consent to publication, please understand that once your story is online, it may be viewed, shared, screenshotted, or reposted by others, including on social media. If you later ask us to remove your story, we will remove it from believepain.co.nz, but we cannot guarantee its removal from copies made elsewhere by third parties.
Your rights
Regardless of where you are based, you have the right to:
- Ask what information we hold about you
- Ask us to correct inaccurate information
- Ask us to delete your information
- Withdraw your consent to publication or campaign use at any time
- Ask us to restrict how your information is used
- Complain to a data protection authority. In New Zealand, this is the Office of the Privacy Commissioner. If you are based in the European Union, you may complain to your national data protection authority.
To exercise any of these rights, contact us at admin@believepain.co.nz. We will respond as quickly as we can.
Children and minors
This form is intended for adults over the age of 16 only.
Security
We take reasonable steps to protect your information, including using a secure (HTTPS) connection for this website and restricting access to submitted stories to the founder of Believe Pain alone. No method of storing or transmitting information online is completely secure, and we cannot guarantee absolute security.
Changes to this policy
We may update this policy as Believe Pain grows. Significant changes will be noted at the top of this page with the date they took effect.
Contact us
If you have any questions about this policy or how your information is handled, please contact us at admin@believepain.co.nz