Privacy policy

Pancreatic Cancer UK believe it’s important to be up front about what we do with your data – we’re committed to keeping it safe and treating it with respect.

This policy outlines everything you need to better understand how we collect and use the information that you either provide to us or which is provided to us about you by third parties or via publicly available sources.

For the purposes of the information we collect directly from you, we are the sole ‘Data Controller’ of your information. This means that only we determine the purpose for and the manner in which your information is used. We’ll never sell your personal information or share it with another organisation for their own marketing purposes.

Pancreatic cancer is a tough disease – tough to diagnose, tough to treat and tough to survive. We provide support, information, campaign and fund research. We wouldn’t be able to continue our fight against pancreatic cancer without your involvement and support.

Your personal data helps us to raise money in a more efficient and cost-effective way, helping us to better target our donation requests and create more meaningful direct marketing campaigns. It also helps us to improve the services we provide to people with pancreatic cancer and helps to change the way in which the disease is diagnosed, managed and treated.

If you’ve got any questions or if you don’t want us to process your information in the ways described, you can get in touch with us in the following ways:

By Post: FAO: Data Protection Officer, Pancreatic Cancer UK, Westminster Tower, 3 Albert Embankment, London SE1 7SP

By Email: dataprotection@pancreaticcancer.org.uk

By Telephone: 020 3535 7090

– Sign up to fundraise for Pancreatic Cancer UK (eg. a marathon or a skydive) or order fundraising materials from us;

– Let us know that they are holding a fundraising event;

– Fill in one of our online petitions;

– Let us know they want to support our work in a more practical way (eg. raising awareness of pancreatic cancer or volunteering for us);

– Make a donation or buy something through our online shop (eg. Christmas cards);

– Request health professional-related information from us or attend an event eg. our Annual Summit

– Submit a request for funding for a specific pancreatic cancer research project;

– Come along to one of our “Living with Pancreatic Cancer” support days, our online support sessions for people affected by pancreatic cancer or contact our confidential Support Line;

– Complete a survey;

– Register to join our online discussion forum; and

– Apply for a job

We indirectly receive personal information when:

– People sign up to participate in a fundraising event on our behalf through an independent third-party website (e.g. Just Giving, Virgin Money Giving);

– When people sign up to join a community fundraising event~

– When people start a fundraising activity for Pancreatic Cancer UK on Facebook

– We sometimes carry out research and analysis using publicly available sources in order to better understand our supporters.

We believe it’s crucial that we raise money in the most cost-effective ways possible. That’s why we sometimes take a closer look at the personal information of our supporters to better understand how they might be able to help in the future. This means we can better target our donation requests and deliver more cost-effective fundraising. See the “Profiling” section in this notice for more information.

Finally, we use Cookies on our website – a cookie is a small text file that we transfer to your computer that helps our website to remember you. Cookies help to improve your experience of using our website by making the interaction faster and easier eg. by automatically filling in your contact details in text fields.

Cookies also capture your IP Address* and information about the device or operating system you’re using. Cookies help us to improve how our website operates which, in turn, means that we can deliver a better online experience to our supporters. For more information on our use of cookies, please read our Cookies Policy.

* An IP address is a unique string of numbers separated by full stops. They are unique to each computer and identifies each device using the internet.

If you choose to support us either by volunteering, fundraising on our behalf, signing up for an event, campaigning alongside us or sharing your experiences of pancreatic cancer, or you submit an application for research funding we collect:

– Your name;

– References from third parties chosen by you if you apply as a volunteer;

– Your contact details (specifically your postal address, telephone number(s) and email address); and

– Where applicable or appropriate, details about your connection to pancreatic cancer.

If you donate or buy something through our online shop, we’ll ask you for your bank/credit card details.

At times, we also collect demographic information from publicly available sources. We ask for this information so that we can:

– Provide you with services and information you’ve requested – this includes sending you information about the fundraising activities/events you’ve taken part in on our behalf;

– Respond to any questions or feedback you might have about our work;

– Send you information about our work that we think you’ll be interested in;

– Process the donations you make to support our work, including Gift Aid;

– Keep up to date with the relationship you have with us. This includes a record of your engagement with us and how you prefer to be contacted;

– Better understand how we can deliver more cost-effective fundraising campaigns as well as improve the services that we offer to people who get in touch with us; and

– Detect and reduce fraud.

If you call our Support Line, our specialist nurses will ask you questions about your experiences of pancreatic cancer. We won’t keep a record of what’s been said during the call unless we have your permission and only the Support Line team will have access to it.

Finally, we ask supporters to give us more information about why they’ve chosen to support us. You don’t have to give us these details if you don’t want to.

We rely on our legitimate interests (see The legal conditions we rely upon to process personal data section) to contact you by post and, unless you’re registered with the Telephone Preference Service (TPS), by phone to tell you about:

– Our research progress and campaigning activities;
– Ways in which you can support us from taking part in an event through to donating;
– The services we provide to people with pancreatic cancer.

If you’ve given us consent, we’ll also contact you by email and SMS (text message). You can withdraw your consent or change the way that we contact you any time, using the contact details below:

By Post: FAO: Fundraising Compliance Manager, Pancreatic Cancer UK, 6th Floor, Westminster Tower, 3 Albert Embankment, London SE1 7SP

By Email dataprotection@pancreaticcancer.org.uk

By Telephone: 020 3535 7090

Alternatively, you can fill in our Contact Preference Form.

We use “email tracking” to review the success of our email campaigns – an invisible pixel is embedded in the emails that we send which tells us how many people have opened the email. This process also logs destination email addresses, IP addresses and email client types. You can “opt out” of tracking by banning html emails.

We use two techniques to keep in touch with you through digital channels:

Pixel-based retargeting

When you visit our website, a pixel (or JavaScript) is placed on your browser, making it “cookied”. When you subsequently leave our site, the cookie notifies “retargeting” platforms (like Facebook etc) to present you with adverts about our work and how you might be able to support us.

You can “switch off” this functionality by changing your browser settings – more information can be found in our Cookies Policy

List-based retargeting

If you have given us permission to receive email communications from us, we sometimes upload your email address (in an encrypted format) to social media platforms such as Facebook and Twitter. Those platforms will then show our digital advertising campaigns to you as well as identifying audiences with similar interests to yours.

If you don’t want to receive this type of targeted advertising on social media, you can opt out at any time by emailing dataprotection@pancreaticcancer.org.uk or by calling 020 3535 7090. Please note that if you do choose to opt out, it will not stop our advertisements being shown to you on a randomised basis.

As a supporter-focussed charity, we want to send you information that we think you’ll be interested in. We believe that this helps to improve your experience of being one of our supporters and also ensures that we’re using our resources in the most effective ways possible.

From time to time, we may use profiling and screening techniques to help us ensure communications are relevant and timely and to provide the best experience we can for you.

When building a profile, we (or our trusted service providers) may look at how you have supported us in the past, your connection to pancreatic cancer, through which channels they have accessed our services, and we analyse geographical, demographic and publicly-available information about you such as your age, financial circumstances, any previous donations that you made, where you live, listed Directorships and your estimated wealth to understand how likely it is you would be interested in supporting us further.

This also allows us to send communications based on the supporters’ individual circumstances which, in turn, means that we are able to target our resources more effectively – something that donors tell us is a key priority for them. There are no other consequences of the profiling activities that we conduct.

We may also use information about you from publicly available sources such as online registries, websites, media or social media, or personal introductions in order to understand more about your interests and preferences so that we can better tailor our communications such as telling you about the things you are likely to be interested in, letting you know of ways to fundraise with us which are relevant to you and making sure that we only talk to you about a financial level of giving that is appropriate to you. We may do this by looking at your career information, peer networks, demographic information, hobbies and interests or other information.

We may analyse data from our database so that we can understand our supporters. For example, we use systems such as Mosaic to create supporter categories within our database based on postcodes and we will, where appropriate, store this information on your record. We will also use broad demographic information such as statistics and analysis from third parties to better understand how our own supporter base compares to the general population. This helps us to decide who to send our communications to and is useful to ensure the communications you receive are relevant to you.

You can object to us processing your personal information this way by contacting dataprotection@pancreaticcancer.org.uk with your request and we’ll ensure that your wishes are respected.

For a small number of our supporters, we may use basic research tools from time to time to estimate potential interest in supporting us further. This helps us identify who might have an interest in the work that we do and perhaps support our cause further by being involved in the events that we hold or by providing a substantial gift.

We process personal information on potential high value supporters in order to help us support more people that have been affected by pancreatic cancer.

Our research findings are only accessible by the Philanthropy and Partnerships team, are stored on the supporter record within our database and contain information found from sources such as Boardex and Companies House.

We sometimes ask existing supporters whether they would be prepared to open their networks up to us. An existing supporter may tell us about an individual previously unknown to us and facilitate an introduction. In this scenario we would advise our existing supporter about our data responsibilities and ask them to ensure that the individual in question is happy for an introduction to take place. Following the introduction, we would direct the individual to this privacy policy and confirm their marketing consent preferences before communicating with them further.

You can object to us processing your personal information this way by contacting dataprotection@pancreaticcancer.org.uk with your request and we’ll ensure that your wishes are respected.

Less Survivable Cancers Taskforce

There are some cancers which have seen remarkable progress in survivability but others where survival rates are far too low and have not changed for decades. Together, they now make up nearly half of all common cancer deaths in the UK. In close collaboration with Action Against Heartburn, British Liver Trust, The Brain Tumour Charity, Core and Roy Castle Lung Foundation we have set up a Taskforce to close that gap.

The taskforce has 5 core objectives:

– Raise awareness of symptoms
– Speed up paths to treatment
– Remove barriers to treatment trials
– Set government-backed survival targets for each cancer
– Increase investments in research

As the “data controller” of the taskforce, we will treat the personal information that you give to us when you join in accordance with this Privacy Notice. You can opt out of being part of the taskforce at any time by emailing campaigning@pancreaticcancer.org.uk or by calling 020 3535 7090.

Unless you’re one of our existing supporters, you’ll only be contacted about the work of the taskforce and we will not share your details with the other charities involved in this project unless we have your specific consent to do so.

All-Party Parliamentary Group on Pancreatic Cancer (APPGPC)

The APPG on Pancreatic Cancer was set up in 2012 by a group of parliamentarians with an interest in making a difference to how the disease is diagnosed and treated in the UK. The APPG on Pancreatic Cancer is primarily an interest group and provides a forum for both MPs and Peers to meet and collaborate with key stakeholders – to share ideas about issues and discuss ways to change the political landscape for the disease. It therefore provides an excellent forum for keeping pancreatic cancer high on the political agenda eg. through debates and oral/written questions.

We are the Secretariat for the APPG on Pancreatic Cancer and we are supported by a range of other interested stakeholders that includes Pancreatic Cancer Action, Pancreatic Cancer Research Fund, NETS Patient Foundation, Pancreatic Cancer Scotland and the Pancreatic Society of Great Britain and Ireland.

As secretariat for the APPG on Pancreatic Cancer, Pancreatic Cancer UK is the “data processor” of the information that you provide when you sign up to become a member. We will therefore treat the personal information that you give to us when you become a member in accordance with this Privacy Notice.

Unless you’re one of Pancreatic Cancer UK’s existing supporters, you’ll only be contacted about the work of the APPGPC and we will not share your details with the other charities supporting it unless we have your specific consent to do so. You can opt out of being an APPGPC member at any time by emailing appgpc@pancreaticcancer.org.uk or by calling 020 3535 7090.

Purple Lights

Purple Lights is an annual campaign run by Pancreatic Cancer UK on ‘World Pancreatic Cancer Day’ and is supported by the following charities:

– Guts UK
– Pancreatic Cancer Action
– Planets Cancer Charity

As the “data controller” of this initiative, we will treat the personal information that you give to us when you join in accordance with the Purple Lights Privacy Notice https://purplelightsuk.org/privacy-policy/

Some of our supporters choose to share their experiences of pancreatic cancer with us which not only gives invaluable insight into the impact of our work but also helps to highlight the urgent need for change to the way in which the disease is diagnosed and treated.

Supporters who share their experiences may:

– agree to share their story with a journalist;
– give us permission to share their story on our social media channels and/or our website;
– share their story at special events run for patients;
– agree to share their experience when taking up opportunities as a member our Research Involvement Network.

If we have the person’s consent, we’ll share the information that they give to us at events, in materials promoting our campaigning and fundraising work, with journalists and/or in press releases and in publications like our annual report.

We also regularly review the types of supporter who provide us with their stories so that we can ensure the views and experiences we hear adequately represent the diverse pancreatic cancer community.

If you contact our Support Line and speak to one of our specialist nurses, they’ll ask you for information about your health or that of a loved one if they’ve got pancreatic cancer.

With your permission, we’ll keep a record of what you’ve spoken to us about. This means that if you contact the support line again, we can provide you with more personalised support.

We may also analyse, group and label the information so we can better understand your needs and improve and extend our services accordingly. This analysis will only be carried out on information relating to your connection to pancreatic cancer, i.e. if you tell us you have had a pancreatic cancer diagnosis. You can object to us processing your personal data this way by contacting suppotercare@pancreaticcancer.org.uk.

From time to time, people who contact our Support Line may be calling for support about a relative or a loved one. In these cases, we do not record identifiable information about the person being discussed but, with the consent of the individual in touch with the service, we will keep details about that person as well as some brief information about the content of the conversation. This helps us to provide a more tailored service.

This information will be stored in a confidential part of our database which can only be accessed by those who need the it to be able to improve our services and offer personalised support. It will be primarily used to provide you with support and information about pancreatic cancer. However, we’ll also use it on an anonymised basis to help improve the general services we provide and to help inform our wider policy and campaigning work.

Depending on the circumstances, the Support Line team might also ask if you’d like to receive updates about our work – for example, through our newsletter. In this case, you’ll need to provide your contact details so that you can be put on our mailing list. Alternatively, you might be directed to our website so you can sign up when (and if) you feel ready.

We use ‘Zoom’ to run online support sessions and webinars for people affected by pancreatic cancer to provide support, information and the opportunity to meet others in a similar situation.

With the webinars we host, we ask people attending to register in advance by sharing some personal information with Zoom via one of our webinar registration forms. Upon registration, Zoom will share your personal information with us so that we can send out the relevant information you need to join the webinar.

With your consent we’ll keep a record of you attending the event along with your personal details in accordance with our data retention policy. Your personal information will be stored securely on our systems and will only be accessed by members of the Services team who organise the events.

If you would like more information on how Zoom processes your personal data, please see their privacy policy here.

Our online discussion forum provides a place for people affected by pancreatic cancer to share their experiences and receive support from other people in a similar situation. It’s a place where people can discuss everything from how to navigate the healthcare system to how to talk about pancreatic cancer with loved ones.

Please be aware that posts on the forum are visible not only to registered users, but to anyone visiting the site. You must be a registered user to post, but all posts are publicly viewable, and may show up in search engine results. We regularly monitor the forum to ensure that posts follow our community guidelines, but encourage users to be mindful of the information they share.

When signing up to the forum, as well as asking those registering to provide their name and email address, we also ask for their postcode and connection to pancreatic cancer so that we can get a better understanding of our regional reach and target our services where they’re most needed. Personal data provided when registering to the discussion forum will be stored within Invision (our forum platform) and on Pancreatic Cancer UK’s confidential database, and will only be accessed by staff working in the Services team. We will only use the information stored on this database for monitoring purposes, to understand more about people affected by pancreatic cancer and how they are using our services.

People can sign up to receive emails from us which provide tailored information about their cancer and the support available. When you sign up, we will ask you questions about your diagnosis and any information you provide will be processed with your explicit consent. We will use this information to provide you with information that is relevant to you and to tell you more about other ways we can support you.

We will also collect your contact details so that we can send you the emails. We will keep a confidential record of your details, in accordance with our data retention policy. This information will be stored in a confidential part of our database which can only be accessed by those who need it to be able to improve our services and offer personalised support.

We may also analyse, group and label the information so we can better understand your needs and improve and extend our services accordingly. This analysis will only be carried out on information relating to your connection to pancreatic cancer, i.e. if you tell us you have had a pancreatic cancer diagnosis. You can object to us processing your personal data this way by contacting dataprotection@pancreaticcancer.org.uk

People can order our information in printed publications through our website. We will collect your contact details so that we can send you this information. If you give us your consent, we’ll keep a record of your order along with your personal details, in accordance with our data retention policy. This information will be stored securely on our website and database, which can only be accessed by those who need it to be able to monitor and improve our services.