Privacy and Data Protection Policy


PolyPeople is committed to protecting your personal information and being transparent about what information we hold. This policy is designed to give you a clear explanation about how we collect and use the personal information you provide to us and ensure that we are honest and clear about your privacy and personal information at all times.

Who are we?

In our policies, 'we', 'us' and 'our' refers to PolyPeople. We are registered with the Information Commissioner's Office as a Data Controller under registration reference

POLYPEOPLE is a trusted support group for those affected by Polyposis syndromes, dedicated to enabling access to the most up to date, useful and relevant help and information and to supporting St Mark's Hospital in their world leading polyposis work. 

This is a voluntary group made of members affected by Polyposis syndromes and we have our right to change it. By using our websites, social media pages, services (including phone and email) or providing your information to us, we will collect and use your information in the way(s) set out in this policy. If you do not agree with this policy, please do not use our sites, social media pages or services.

We may make changes to this policy from time to time. If we do so, we will post the changes on this page and they will apply from the time we post them. This policy was last updated on 1/08/2018 regarding our information about email marketing.

Personal data is information that can be used to help identify an individual, such as name, address, phone number or email address. Some categories of data are more sensitive, which is known as personal sensitive data or special category data, including health information. Non-personal data is data that can't identify you personally, but can provide us with information to improve our services.

Overview of this policy

It's important that you read our policy in full but to help guide you if you don't have time right now, here is a quick summary:

  • We collect information that can be personal data, sensitive personal data or non-personal data.
  • We collect information about the people we support, our supporters, funders, and volunteers,
  • We collect information to provide services or goods, to provide information, to provide grants to researchers, to fundraise, for administration, research, to better understand our supporters.
  • We only collect the information that we need or that helps us to provide the best possible service and fulfil our aims and objectives.
  • We do our utmost to keep personal information secure, including SSL technology (secure server software) on all of our websites and storing data on a secure database.
  • We never share your data with another company or charity for their marketing or commercial purposes.
  • We only share data where we are required by law or with carefully selected suppliers and trusted partners who work with us, for example, a mailing house to send out our newsletter. All our partners are required by their contract with us to treat your data as carefully as we do, to only use it as instructed and to allow us to check they do this.
  • Our websites use cookies so we can give you a personalised website experience.

Our full policy

This policy applies to our website, our use of emails and any other methods we use for collecting information. It covers what we collect and why, what we do with your information, what we won't do with your information and what rights you have.

The information we collect

We collect information when you interact with us in order to support you in the most effective way.

We collect three kinds of information

1. Non-personal information such as IP addresses (the location of the computer on the internet), pages accessed and files downloaded. This helps us to understand how many people use our websites, how many people visit on a regular basis and how popular/useful our web pages are. This information doesn't tell us anything about who you are or where you live.

2. Personal information. We will ask you for information in order to provide you with the services requested, for example to send you information or process a donation.

3. Sensitive personal information or special category data. We may ask you for information about your health, for example, the type of Polyposis syndrome you are living with, so that we can provide you with relevant information and support. We may also collect this information if you make the information public or if you tell us about your experiences relating to a syndrome (for example, if you agree to share your story with us). We only collect this information with your consent.

Under 16s

We are committed to protecting the privacy of the young people that engage with us. If you are under 16 and would like to get involved, please ensure you have consent from a parent or guardian before you provide your personal information to us. 

How we collect your information

We collect information about you in the following ways:

Information you give to us directly, for example when you:

  • Sign up to take part in or attend one of our fundraising or support events
  • Register with us
  • Make a donation or tell us about your fundraising plans
  • Contact our Information and Support Team, when you may choose to provide details, including details of a personal nature in particular about you or someone else's health
  • Join our closed Facebook support groups
  • Choose to share your story with us
  • Take part in surveys, questionnaires or get involved with our campaigns
  • Volunteer with us or apply to work with us
  • Sign up to our e-newsletter
  • When you visit our website, we collect technical information such as the IP address you use to visit the website, your browser type and version
  • Contact us or become involved with us in any other way not listed above.

Information from third parties

We may also receive information about you from third parties if you have given them permission to share this information and indicated that you wish to support PolyPeople, for example, if you set up a fundraising page for us with JustGiving, sign up to a challenge or enter an independently organised event like the London Marathon.

Depending on your settings or the privacy policies for social media and messaging services, we may access information from those accounts or services.

If you have been named as the Executor on a Will, we may receive your details in order to administer a Gift left to us in that Will.

Your credit and debit card information

If you use your credit or debit card to donate to us, pay for a registration or make a purchase over the phone, we will ensure this is done securely and in accordance with the Payment Card Industry Data Security Standard. We do not store your credit or debit card details at all following the completion of your transaction. All card details are securely destroyed once the payment or donation has been processed.

All purchases and donations completed online are handled securely by Stripe or PayPal and we do not receive your card details.

How we use your data

We will mainly use the information we collect about you to:

  • Provide you with the services, products or information you asked for.
  • Administer your donation or support your fundraising, including submitting your details to HMRC to claim Gift Aid if applicable.
  • Administer your participation in an event.
  • Keep you up-to-date with the impact of your support and to ask for financial and non-financial support.
  • Support and further our mission, for example if you have shared your story or given us consent to use your photo, we may use this in marketing or promotional materials.
  • Carry out any obligations arising from any contracts entered into by you and us.
  • Process a job or volunteering application.

Keeping a record of your relationship with us

We record contact we have with you, so we have a clear understanding of our relationship, how you've supported us or have been supported by us in the past. We may also collect and retain your information if you send us feedback about our services, give us a compliment or make a complaint.

Understanding how we can improve our services, events, products or information

We believe it's important to make sure that all of our services are the very best they can be, which is why we evaluate them. Once you've used one of our services, taken part in an event, received information or bought a product, we may get in touch to ask you about your experience. You don't have to take part but it's really valuable to help us improve in the future.

Understanding our supporters and working more effectively

We are committed to providing everyone who gets in touch with us with the very best experience, providing you with timely and relevant communications and using our resources effectively.

By doing this it allows us to understand the background of the people who support us and helps us to make the right requests. Importantly, it helps us to raise more funds, sooner, and more cost-effectively, than we otherwise would.

Communicating with you

We may contact you about fundraising, campaigning, events and trading. We do not ask for consent to write or call you about these things, because each of these activities is fundamental to how we work, so we have a legitimate interest to contact you. However, you will also have an option to opt-out of receiving marketing communications by post or phone.

We will only send you marketing communications by email if you have consented to receive these. You can unsubscribe at any time by clicking on the link in the email. Our mass email service allows us to track who has opened our e-newsletter and what links have been clicked on. This allows us to monitor what information is most useful to improve our content and information in future.

Storing your data

When you give us your details, you agree to us recording your details on our secure database, so we can provide you with the best possible service every time you contact us. We hold your personal information for as long as required to provide you with the information or services you have requested, to administer your relationship with us, to comply with the law or to ensure we do not communicate with people who no longer wish to hear from us.

PolyPeople holds its data on a secure database. Access to this system is limited.

PolyPeople will ensure that personal data will be processed in ways that are:

  • Lawful, fair and transparent
  • Collected for specific explicit and legitimate purposes
  • Adequate, relevant and limited
  • Accurate and up-to-date
  • Not kept for longer than necessary
  • Secure

Your details will be kept securely and only shared with trusted suppliers. At all times we remain legally responsible for your data. We never share your data with any third parties for their own marketing or commercial purposes, including charities.

Use of cookies and other online technology

Facebook and Instagram

We participate in Facebook's and Instagram's Custom Audience and Lookalike Audience programs so that you can receive relevant ads from us when you use these social media channels, and so that we can raise awareness among users of these platforms who share similar interests to you. We provide personal information such as your email address to Facebook and/or Instagram to enable them to determine if you are a registered account holder with Facebook and/or Instagram. Our adverts may then appear when you access Facebook and/or Instagram and on your Facebook and/or Instagram feed. Your data is sent in an encrypted format that is deleted by Facebook and/or Instagram if it does not match with a Facebook and/or Instagram account. For more information please read Facebook and/or Instagram's Data Policy. 

Cookies, web beacons and similar technologies

We may use cookies, web beacons, and similar technologies to collect, use and share certain information about your device(s), your use of our websites, app(s) or services and other unique identifiers personal to you with third party platforms so that they may target ads to you and to others, based on other information that third party may hold about you. In some cases, these third-party platforms may also collect some or all of the above information using cookies or similar technologies. Where they do so, their collection, use and protection of your information is governed by those third parties' privacy policies and practices, and not this privacy policy.

We don't store personally identifiable information, but we do use the information we gather to help improve the experience of our website. For example, they help us to identify and resolve errors, or to determine the most relevant information and services to show our visitors in the future.

Keeping your information up-to-date

Your personal preferences and keeping your data accurate are of utmost importance to us.

If at any stage you do not want to hear from us or want to update your details, you can email us or unsubscribe from our newsletters.

Any person whose personal information is held or processed by PolyPeople has the right to know:

  • What information we hold about them.
  • How to gain access to this information.
  • How to keep it up to date.
  • What we are doing to comply with the Data Protection Act 1998 and EU General Data Protection Regulation.

Individuals have a right to access certain personal data being kept about them, either physically or digitally. Anyone who wishes to exercise this right should apply, in writing, to the Data Protection Officer at the address above. We will respond within one month, providing that the request includes appropriate contact details, proof of identity from the individual and we can validate the request.

If you are unhappy at any time about the way we process your personal information, please contact the Data Protection Officer who will investigate your concerns.