We couldn’t do any of our lifesaving work without supporters like you. Whether it’s joining the register, being a donor for research and product development in cell and gene therapies or generously giving financial donations, getting behind our campaigns, volunteering your time, or being bold advocates of our work - your support means everything. The information you provide helps us to carry out our lifesaving work and allows us to let you know about the difference you’re making.
WHAT INFORMATION WE COLLECT
First things first, we want to let you know what personal information we collect, and how we collect it when you help us in our work by joining the register, being a potential donor for research and product development in cell and gene therapies or raising funds. The main pieces of information we collect are:
- Postal address
- Email address
- Phone number
In some cases, where appropriate, we may also collect your date of birth, and some information about your interests and preferences to make sure we’re sending you the most relevant communications. If you sign up to the register, are a potential donor for research and product development in cell and gene therapies or donate cord blood, we’ll also collect some health information from you and from the samples you provide. You can read more about how we process your sensitive personal data (e.g. information about your health, ethnicity and tissue type) in the How we use and process your information section below.
We will always seek consent from a parent or guardian before collecting information about children. Some of the reasons we collect and manage information about children are for the purposes of running patient appeals, developing patient case studies, organising photo shoots, and judging entries related to children who have been nominated for an Anthony Nolan Supporter Award. Every time we work with a child we seek the parent or guardian’s consent for the specific activity we are carrying out.
Our website is not intended for use by individuals under the age of 16 without the agreement and involvement of a parent or guardian.
WHEN WE COLLECT YOUR INFORMATION
There are a number of instances when we might collect information from you. These include when:
- you obtain, or let us know you’re interested in, an Anthony Nolan product or service (for example, registering for an event)
- you give us any information on our website, in writing, face-to-face, by chatting to us on social media or over the phone (including if your call is recorded)
- you register an interest in, or apply for, a job vacancy or volunteering opportunity
- you ask for information or assistance from us, or if you make a complaint
- you give us your details when you make a financial donation
- we are provided with information from a third party where we need to find more up to date contact information for you, or when we are conducting statistical analysis or research
- you use any other new and exciting features on our website that might sometimes require you to provide more information.
HOW WE COLLECT YOUR INFORMATION
We collect information in the following ways:
- When you give it to us DIRECTLY
You may give us your information in order to sign up to the stem cell register, as a potential donor for research and product development in cell and gene therapies, for one of our events, to tell us your story, make a donation or communicate with us. Sometimes when you support us, your information is collected by an organisation working for us (e.g. a professional fundraising agency), but we are responsible for your data at all times.
- When you give it to us INDIRECTLY
- When you give permission to OTHER ORGANISATIONS to share or it is publicly available
We may combine information you provide to us with information available from external sources in order to gain a better understanding of our supporters to improve our fundraising methods, products and services.
This information comes from the following sources:
Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp or Twitter, you might give us permission to access information from those accounts or services.
Information which is publicly available
This may include information from public sources such as: Companies House; the Charity Commission; newspapers and online media; company or charity websites and accounts.
HOW WE PROTECT YOUR INFORMATION
We’ve been signing people up to our stem cell register for over 40 years, and we go to great lengths to keep all your information safe. We invest in the appropriate resources to protect your personal information from loss, misuse, unauthorised access, modification or disclosure. We make sure we manage it in accordance with our legal responsibilities under applicable data protection laws. However, no internet-based site, including email, is 100% secure, so we cannot be held responsible for unauthorised or unintended access that is beyond our control.
HOW WE USE AND PROCESS INFORMATION
After we have received your information, there are a variety of ways in which we might use it to ensure we give you the best possible service. They include:
Providing services and processing information internally
- Entering and managing your details if you choose to join the Anthony Nolan register or as a potential donor for research and product development in cell and gene therapies
- If you come up as a potential match, contacting you or tracing you through your GP, other medical practitioners, or data tracing services (where some of those companies, for example, GBG Plc, will then become a controller of your data). Only a minimum amount of contact details is shared with our tracing service companies;
- Providing the product or service you wish to use, or any information about it;
- Confirming, updating and improving our records to make sure we have the correct information, or if we require additional information in relation to you being a potential stem cell donor or a potential donor for research and product development in cell and gene therapies (by contacting you or by using a carefully selected external company, for example, GBG Plc);
- Processing sales transactions, donations, or other payments and verifying financial transactions;
- Troubleshooting and fixing problems with the website, including instances when we want to improve your user experience.
Managing and improving our relationships with supporters
- Informing you of any new products or services, news about Anthony Nolan and other ways you can help us with our lifesaving work. We will use your data in order to tailor and improve our communications so that they are relevant to you;
- Contacting you about any Anthony Nolan fundraising events you have signed up to, so we can give you information and support;
- Ensuring our communications are timely and relevant, so you’re only receiving the information you want. We will analyse data from our database so that we can better understand our supporters. For example, we use third parties such as CACI to create supporter categories within our database based on postcodes and we will include this information with the rest of the personal data we hold on you. 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.
This activity assists us in understanding the background of the people who support us and helps us to make appropriate requests to supporters who may have the means and the want to give more. You can opt out of your data being used in this way by contacting us on 0303 303 0303 or emailing firstname.lastname@example.org;
- Asking you about supporting our lifesaving work through a fundraising request, provided we have the legal basis for doing so;
- Inviting you to get involved with voluntary surveys, campaigns or research (either internally or by another company) to find out more about the demographics, interests and behaviours of our supporters;
- Where you have agreed to receive email or SMS marketing communications from us, we may provide your email address or mobile phone number in an encrypted format to social media companies, such as Facebook, Instagram, Twitter or YouTube, or to digital advertising networks that are providing services to us by displaying our advertising to you on those social media platforms and other websites, as well as identifying audiences with interests similar to yours. You can opt out of your data being used to display advertising to you by contacting us on 0303 303 0303 or emailing email@example.com. However, this will not prevent our advertisements being shown to you on a randomised basis or based on cookie data and may mean that you stop receiving marketing communications from us more generally.
Responding to any queries or issues
- Responding to any queries or complaints that you raise.
Conducting training and reviews of our service
- Enhancing or reviewing the service we provide to you, and meeting training needs;
- Conducting statistical analysis and research using, where possible, anonymised data.
Meeting our legal obligations
- Using information for auditing purposes;
- If we have a legal obligation to use or disclose information about you for instance, where we are ordered by a court or regulatory authority or we are legally required to hold donor transaction details for Gift Aid or accounting/tax purposes.
- When we consider you for potential job or volunteering opportunities where you complete an application;
- Transferring information to any entity which may acquire the rights in us (for example, as the result of a merger);
- For any other purpose to which you agree.
In certain instances, we may collect and use personal information where this is necessary for our own (or a third party’s) legitimate interest such as:
- processing in relation to your status as a potential stem cell donor on the register or as a potential donor for research and product development in cell and gene therapies, including email, social media and postal communications with you (see How We Will Communicate With You section below);
- sending direct marketing material to you by post or contacting you by telephone for fundraising purposes (subject to checking against any existing marketing preferences);
- conducting research to better understand who our supporters are and better target our fundraising activity;
- conducting scientific research to improve Anthony Nolan’s transplant activities, including advancing the understanding of blood cancer, stem cell transplants and educating healthcare professionals and the general public, as well as promoting research into the causes, prevention and cure of blood cancer, and publishing the results of such research on an anonymous basis;
- monitoring who we deal with to protect our charity against fraud, money laundering and other risks;
- maintaining and administering our register, supporter database and systems;
- processing in relation to keeping the transplant community informed, including e-mail newsletters;
- conducting research to identify potential new supporters of our life-saving work.
Processing your sensitive personal data
We process some of the sensitive personal data you might provide, (e.g. information about your health, gender, ethnicity and tissue type) where you have given your consent to do so, as set out on applicable forms, or where you have made that information manifestly public or where there are public interest reasons in the area of public health, archiving purposes or scientific research purposes. This information helps us match potential stem cell donors (and cord units) to patients who may have the same or similar profiles. In order to find donor matches for patients outside the UK, we will share your data (in a pseudonymised form) with international registries and transplant centres, which may be located outside of the EEA. We use predictive statistical techniques (using your data, including personal sensitive data) to decide how to communicate with you in relation to your status as a potential stem cell donor. Where we process your sensitive personal data for scientific research purposes, we will implement appropriate safeguarding measures such as pseudonymising or anonymising information (where applicable).
Sensitive personal data may be relevant to providing an effective relationship with major supporters, or shared with us by supporters. In such cases we will use this data in a sensitive and appropriate way.
HOW WE KEEP YOUR INFORMATION SAFE AND WHO HAS ACCESS TO IT
We want you to know that we will never sell or pass on your personal information to third parties for their own marketing purposes. There may be some third parties that we need to share personal information with in order to help us provide services and products to you and to run our website, including the following:
- Related Anthony Nolan entities**, if you ask us to do so, so we can manage our supporter relationships, administer our business and let you know about Anthony Nolan news, products and services which might be of interest to you;
- Any entities who may, or do, acquire any rights in us in a merger, acquisition or reorganisation;
- Our advisors, in order to help us better manage, support or develop our organisation and comply with legal and regulatory obligations;
- Any service providers who need to know certain information in order to provide you (or us) with a product or service – such as sending out your donor welcome pack if you join the register;
- Our partners including, for example, event organisers we work with;
- Law enforcement bodies and/or regulatory entities, in order to comply with any legal obligation or court order.
We use external companies to collect or process personal data on our behalf. However, we always carry out comprehensive checks on these companies before we work with them and put a contract in place to set out our requirements, especially in relation to how they manage the personal data they collect or have access to.
Some of our suppliers run their operations outside the European Economic Area (“EEA”) where different privacy laws apply, which may include lower security requirements and fewer rights for individuals. Where your personal information is transferred, stored and/or otherwise processed outside the EEA, we will take all reasonable steps to ensure that there are appropriate safeguards in place to protect your personal information (such as entering into standard contractual clauses).
We may share anonymised or pseudonymised data about you with organisations engaged in related research activities to help improve transplant outcomes for our patients, but, as this information is anonymised or pseudonymised, these organisations will be unable to identify the information as relating to you.
HOW WE WILL COMMUNICATE WITH YOU
Potential Stem Cell Donor Communications
You can always opt out of receiving the marketing and fundraising communications (see below), but we will always contact you in relation to your status as a potential stem cell donor and your status as a potential donor for research and product development in cell and gene therapies. Once on the register, you will stay on it until your 61st birthday (unless you ask to be removed before that date by contacting us on 0303 303 0303 or emailing firstname.lastname@example.org). Our experience managing the register informs us that we need to periodically connect with you, to ensure that you’re available and ready to save a life. We need to make sure we can get in touch with you if you are ever found to be a match for a patient; otherwise, we can’t save as many people. We use email, social media and, if necessary, post to encourage you to engage with us, to keep your contact details and medical status up-to-date.
Marketing and Fundraising Communications
Separate to potential stem cell donor communications, we will contact you so we can update you on news about the stem cell register, information about campaigns to get involved with, ways to financially support our lifesaving work, stories from patients, and other news we think you’d be interested in. It is always your choice as to whether you want to receive information about our work, how we raise funds and the ways you can get involved.
You can update your communication preference or unsubscribe from these communications at any time (including telling us that you don’t want us to contact you for marketing purposes by telephone, or by post) by clicking the link provided in every message we send you or by contacting us (see Contacting Us section below). We will not use your personal information for marketing purposes if you have indicated that you do not wish to be contacted by us for such purposes. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you.
Unless you choose to hear more from us, our communications with potential stem cell donors tend to be quarterly at the most. We may contact stem cell donors with information related to your status on the register, facts about stem cell donation and to ask you to update your details so that you can stay active on the register. We won’t send you appeals or fundraising requests as part of the above communications - unless you’ve told us separately that you want them.
We will never pass on your information to other companies or charities for their own marketing purposes. We may use third party data tracing services and publicly available sources in order to make sure your information is up to date so we can keep in touch.
HOW WE RETAIN YOUR INFORMATION
The information you provide will be retained by us in accordance with applicable laws. We will take reasonable steps to destroy or de-identify personal information we hold if it’s no longer needed in connection with the purpose(s) for which it was collected and/or processed.
However, if you do choose to share your information with us publicly (for example, photos or footage on social media), then it’s possible that other people may have copied this information during the time that it was live, and therefore use of it is beyond our control.
We’d also like to note that, if you decide to sign up to the Anthony Nolan stem cell register, you will stay on the register until you are 61 years old, unless you decide to close your record on the register before that time. You can request copies of your personal information that we hold at any time (see What your rights are section below).
VISITING THIRD PARTY WEBSITES
WHAT YOUR RIGHTS ARE
We want to make sure you’re in control of how we use and keep your information.
You have the right to:
- be told how your personal information will be used;
- request a copy of the information we hold about you;
- update or amend the information we hold about you if it is wrong;
- change your communication preferences at any time;
- ask us to restrict the processing of your personal information if there is a disagreement about its accuracy or legitimate use;
- ask us to remove your personal information from our records;
- request an electronic copy of your personal information be sent to you, or another organisation;
- object to the processing of your information for marketing purposes on the basis of a legitimate interest or for statistical purposes;
- ask us for human intervention or to challenge any such decision where we take automated decisions in relation to your personal information; or
- raise a concern or complaint about the way in which your information is being used.
Request a copy of the information we have on you.
Data Protection Team
2-3 Heathgate Place,
75-87 Agincourt Road,
London NW3 2NU
Or you can find out more on the Information Commissioner’s Office website at https://ico.org.uk/for-the-public/
HOW YOU CAN CONTACT US AND FIND UPDATES TO THIS POLICY
*’Us’, ‘we’ or ‘our’ refers to the registered charity Anthony Nolan (no. 803716 in England and Wales/ no. SC038827 in Scotland) and a company limited by guarantee (company no. 02379280) and Anthony Nolan Trading Limited, a limited company (company no. 02511952).
The Royal Free Hospital, Pond Street, Hampstead, London, NW3 2QG
2-3 Heathgate Place, 75-87 Agincourt Road, Hampstead, London NW3 2NU
**We are registered with the UK Information Commissioner’s Office (ICO) as a data controller under registration number Z3022117 (Anthony Nolan) and Z4877402 (Anthony Nolan Trading Limited). To comply with the General Data protection Regulation (2016/679) we have appointed a European representative. If you wish to contact them, their details are as follows: Bird & Bird GDPR Representative Services SRL Avenue Louise 235 1050 Bruxelles Belgium EUrepresentative.AnthonyNolan@twobirds.com
Last updated on 20/06/2022