Privacy policy

Lymphoma Action provides information and support services to people affected by lymphoma, and to healthcare professionals working with people affected by lymphoma. This includes booklets and information sheets, our website, workshops and events, training, support groups, individual support and a helpline. We have a Publications Team which works to the standards of our Patient Information Forum (PIF) tick accreditation, developing and maintaining the information we provide.

We fundraise to support these services, as well as for the creation of accurate and well-researched information.

To do all this, we have a database that contains personal data collected in the course of our interactions with supporters, people affected by lymphoma, healthcare professionals, our volunteers and staff. We always aim to keep your information up to date, and we may use publicly available sources such as the Royal Mail’s Postcode Address File to do this.

We value our relationship with you, and we use your personal data to ensure we contact you in the most appropriate way, to improve our services and to ensure we work efficiently and effectively. We will always give you an opportunity to express your wishes, and you can opt out at any time.

The information we hold about you may include:

• Name and title
• Contact details including postal address, email and phone numbers
• Records of communications sent to you
• If you have donated to us, your donations and gift aid status (as required by HMRC)
• If you volunteer for us, what your interest are, and what roles you are doing
• If you have contacted us for help and support, information you choose to share with us about lymphoma and your health (for example your relationship to lymphoma, diagnosis/type and treatment information) to help us provide appropriate support, and (where we ask separately and it is optional) equality monitoring information such as ethnic origin*
• If you are a healthcare professional or are fundraising associated with a company, your job title(s) and the organisation(s) you work for
• Your contact with us including attendance at our events and use of our services including purchases
• Your contact preferences
• Information about your capacity or propensity to support us
• Your age (your year of birth)
• Your gender (on an optional “equality monitoring” basis)
• Your ethnic origin (on an optional “equality monitoring” basis)*
• Your story where you have chosen to share it with us or with the media

Lymphoma Action does not store any credit/debit card details. For processing card payments, we use third parties that are fully compliant with the appropriate standards. Bank details used for processing Direct Debits are stored by us and shared with a trusted third party, under the Direct Debit Guarantee scheme.

We may hold some information about your health (including lymphoma-related information) and, where you choose to provide it, your ethnic origin. These are called “special category” types of personal data. We use this information to help us provide appropriate information and support, and to better understand who we are reaching so we can improve our services and promote equality of access.

We will only collect and use this information where it is necessary and proportionate, and we will ask for it in a clear and sensitive way. Where questions are optional (for example, equality monitoring questions), you can choose not to answer (including selecting “prefer not to say”) and this will not affect your ability to access support. Access to special category data is restricted to trained staff who need it for their role, and we use aggregated/anonymised reporting where possible.

Only if applicable: If we ever want to use health-related information (for example, whether you are newly diagnosed or in treatment) to tailor fundraising or marketing communications to you, we will only do this where you have given explicit, clear consent and you can withdraw that consent at any time. We will not use previously collected health information for this purpose unless you have been told about this and have actively opted in. 

If you have shared your story with us, we will hold the medical information you provided. We obtain written consent for all stories we collect and use, and you or your next of kin are able to withdraw that consent at any time. If you do withdraw your consent, your story will be removed from printed materials when the publication is next refreshed.

The vast majority of information we hold is obtained from you as part of providing information and services to you. When we collect it, we will tell you why we are asking for it. Sometimes we may also ask optional questions (for example about your age, gender, and ethnic origin) to help us understand who we are reaching and to improve equality of access to our services. Information is collected:

• When you contact us for help and support, so we can provide you the correct services, we can stay in contact with you if you want us to, and monitor our delivery
• When you want printed material from us, so we know to whom and where to send it
• When you fundraise or donate to us, so that we can record your support, thank you, and share other ways to get involved
• If you participate in our online services such as online support meetings, so that we can share details of the event and others in the future
• If you sign up to attend a meeting, event or training, so that we can facilitate your participation and share other opportunities
• If you sign up to volunteer for us, so that we can involve you in our work and share with you the many different ways to volunteer your time

We may also receive your information through third parties such as Just Giving, Enthuse, Much Loved and similar services.

Where you are obtaining services from us, accessing information, or attending our events, including fundraising events, we will use your information to ensure we provide the best service to you.

In communicating with healthcare professionals, we will ensure you are aware of the information and support we can provide to your patients, and the training, events and forums we can provide to you, and you may always opt out.

We use personal data for staff and applicants to fulfil our contractual obligations to them.

Generally, we use personal information for internal administration to support our activities and, aggregated and anonymised, to provide reporting and analysis to inform development and strategy.

We may use information about your age, gender and ethnic origin to monitor and improve equality of access to our services (often called “equality monitoring”). This is usually done using aggregated and anonymised reporting so that individuals are not identified. Where we collect or use information about your health (including lymphoma-related information) or your ethnic origin, we apply additional safeguards because these are special category types of personal data. 

Lymphoma Action may collect health-related information through surveys administered via SurveyMonkey. SurveyMonkey is certified under the UK Extension to the EU-U.S. Data Privacy Framework (DPF), which includes provisions for the processing of sensitive data, including health data. In accordance with the DPF Principles, we inform all our survey respondents about the nature of the data being collected and obtain explicit consent prior to processing any health-related information.

For fundraising and general communications, we will contact you in the post or via telephone under legitimate interest, and by email and SMS where we have your consent to do so. You can opt out at any time. We will use your information about donations and gift aid declarations to claim gift aid from HMRC.

We many gather information about you from publicly available sources for example Companies House, the Electoral Register and the media to help us to understand more about you as an individual and your propensity to support Lymphoma Action.

We also use publicly available sources to carry out due diligence on donors in line with Lymphoma Action’s Gift Acceptance Policy and to meet money laundering regulations.

Tools may be used to help us improve the effectiveness of our communications with you, including tracking whether the emails we send are opened and which links are clicked within a message. We monitor website visits and use tools such as Google Analytics to improve our website and services.

We may use your social media profile to help us find more people like you, so that we can grow our supporter base through online channels. We use third party services to do this which you are likely to be familiar with including Google, Facebook and X (formally Twitter), including the Meta Pixel, which tracks our social media followers’ activity on our website. We will only use the Meta Pixel to track activity where you have consented to the cookie banner on our website. 

Lymphoma Action is a joint data controller with Meta for the purposes of data collected and processed on their platforms, including Facebook and Instagram. You may like to familiarise yourself with Meta’s Privacy Policy.

From time to time, and if you have consented to email marketing, we may securely provide contact details such as your name and email, address to digital advertising networks or social media companies as Facebook, Google, and X (formally Twitter). This could enable us to display relevant adverts to you, or to potential supporters who have similar characteristics.

Any information we share with social media companies will be shared in an encrypted format and will not be used for the social media companies’ own purposes. You can object to your information being used in this way by contacting us.

Fundraising is a key part of Lymphoma Action’s work and we are committed to working in a transparent, ethical, responsible, and honest way. To reflect this commitment, we are a member of the Fundraising Regulator and committed to the Regulator’s code of Practice. We will always abide by our fundraising promise.

Where your consent (or opt-in) is needed for us to process your information or send communications to you, we will try to obtain your consent when you initially give us your personal information. If we have consent from you by more than one route, we will work to your most recent consent or opt-ins. You may withdraw your consent at any time.

If you provide us with contact details for a particular method of communication, we will assume that you have given us your consent for us to update your record accordingly. Where we hold your postal address and/or telephone number, we may communicate with you using this information under legitimate interest, unless you have told us otherwise. We will only communicate with you via email or SMS where we have your consent to do so. Contact details provided directly by you will update any previous preferences in relation to this channel unless you inform us otherwise. 

If you are registered with the Telephone Preference Service (TPS) but provide us with a telephone number we will assume that we have your consent to call you on this number for administrative purposes.

We will always seek consent from a parent or guardian before collecting personal information about children. We do process information about children, typically where they, a parent or relative are affected by lymphoma, or they are fundraising for us.

Our website uses cookies. These are small files stored by your browser on your computer. Visit our cookies information for more details.

We use appropriate security measures to keep information safe and these are externally assessed to the Cyber Essentials security standard. This covers technical measures, our security policies and staff training.

Where we use third parties to process your information, we ensure they have robust security and clearly defined data protection obligations as the data processor under their signed agreement with us.

We do not share your information with other charities. The exception to this is where we work in collaboration with other charities to deliver events and services, or develop resources. If they are the main organiser your information will be processed and held by them, not by us, and vice versa, however your data may be shared for the purposes of event or service delivery, or for the preparation of the resource and this will be made clear to you at the point of sign-up. We will never sell your data.

If you request a copy of the information we hold on you (via a data subject access request) we will take reasonable steps to verify your identity before providing it to you, as we do not want to give your personal information to someone else.

We are a UK charity and do not normally send information out of the European Economic Area. When we do so, we ensure that the data processor concerned complies with the EU Data Privacy Framework.

The information you provide will be retained by us in accordance with the UK General Data Protection Regulation (GDPR). We set retention periods for all personal information based on how long it is legitimately needed to run the charity and legal requirements. Usually, this will be seven years from your last interaction with us, with the exception of anyone who has kindly pledged to leave us a legacy (their data will remain indefinitely so that we can track their gift) and anyone who has provided consent for us to use their story and/or image (this data is retained so that we can action requests from them, or their next of kin, to remove these from the public domain). We will take reasonable steps to destroy or de-identify personal information when it is outside its retention period.

Please note that if you have publicly shared information with us (for instance via social media) it may well have been copied by other people or organisations outside of our control.

While we hold information about you, you will always have the right to:

• Be informed how we use your information (via this privacy policy)
• Request a copy of the information we hold about you (data subject access request)
• Update, amend or rectify the information we hold about you
• Change your communication preferences at any time
• Ask us to remove your information from our records (note there are limitations on this, such as where we must retain data from HMRC or legal purposes)
• Withdraw consent, wherever it is basis for our use of your information
• Object to processing in certain circumstances including where we rely on legitimate interests (including equality monitoring where that is the lawful basis), and (where applicable) to any automated decision-making or profiling 
• Ask us to provide your data in a structured, commonly used format or transfer it to another organisation, otherwise known as the right to data portability

And you have the right of judicial review if you feel we have refused a legitimate request about the above.

Lymphoma Action can be contacted by email at enquiries@lymphoma-action.org.uk, by post at Lymphoma Action, Unit 3, Bell Business Park, Smeaton Close, Aylesbury, Bucks HP19 8JR or by phone on 01296 619400.

Lymphoma Action's Data Protection Lead is our Chief Executive, Ropinder Gill. Ropinder can be contacted at r.gill@lymphoma-action.org.uk or on 01296 619410.

Please talk to us. We will promptly respond to complaints and correct any information that we hold about you if it is found to be incorrect, especially your contact preferences.

You can also contact the Fundraising Regulator to complain via their website www.FundraisingRegulator.org.uk and you have the right to contact the Information Commissioner’s Office (ICO) either via their helpline 0303 123 1113 or online at ico.org.uk.

For consumer related issues, in accordance with Part 4 of 2015 No. 542 Consumer Protection, the Alternative Dispute Resolution for Consumer Disputes (Competent Authorities and Information) Regulations 2015, we are signed up to ADR Group (www.consumer-dispute.co.uk) as our ADR Entity. In the event our internal dispute resolution process does not resolve the issue you have recourse to them.