Lymphoma Action could not provide the information and services we do for people affected by lymphoma without your support. Whether it is giving financial donations, raising money for us, getting involved in our campaigns, volunteering, or being advocates for us, your support means everything to us. The information you provide helps us do all this and allows us to keep you informed about our work and developments in the treatment and care of lymphoma, which is why we’d love you to opt-in to hear from us.
What we do
Lymphoma Action provides information and support services to people affected by lymphoma, and to healthcare professionals working with people affected by lymphoma. These include booklets and information sheets, our website, events, training, support groups, individual support and a helpline. We have a publishing team working to the information standard, developing and maintaining the information we provide.
We fundraise to support these services, as well as the creation of accurate and well-researched information.
In order 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 will use publicly available sources such as the Royal Mail to do this.
We may also use information from publicly available sources to carry out research to assess your inclination and capacity to support Lymphoma Action financially or by volunteering your time. How we look after and use your information is explained in more detail below. You will always have the right to opt out.
We value our relationship with you and we use your personal data to ensure we contact you in the most appropriate way, improve our services and to ensure we work efficiently and effectively. We also want to make sure you only receive the information that you want and need and will seek your opt in as appropriate. You can opt out at any time.
What information we collect
The information we hold about you may include:
- Name, title, gender
- 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, including what your interests are, and what roles you are doing.
- If you have contacted us for help and support including some medical information to enable us to provide you with the information appropriate to you.
- For healthcare professionals and fundraising associated with companies, your job title(s) and the organisation(s) you work for
- Your contact with us including attendance at our events and support groups and use of our services including purchases
- Your contact preferences
- Information about your wealth
- Media articles about you
Lymphoma Action does not store any credit/debit cards 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 a trusted third party, under the Direct Debit Guarantee scheme
How we collect it
The vast majority of information we hold is obtained directly 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. This includes:
- When you contact us for help and support, so we can stay in contact with you if you want us to
- When you want printed material from us – we need to know who and where to send it
- When you fundraise or donate to us
- If you participate in our forums
- If you sign up to attend a meeting, event or training
- If you sign up to volunteer for us
We may also receive your information through third parties such as Just Giving, do-it.org and similar services.
How we use your data and on what basis
Where you are obtaining services from us, such as 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 fulfill 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.
For fundraising and general communications, we will only use your information if we have your explicit consent to do so. We will use your information about donations and gift aid declarations to claim gift aid from HMRC.
We may 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 ability to support Lymphoma Action including financially.
We may engage other organisations such as Factary and Prospecting For Gold to carry out research and wealth screening to help us identify people who may be able to support us with a larger gift. We use this information to tailor our communications with you and invite potential supporters to events that might interest them. You will always have the right to opt out of this processing.
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 Twitter.
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 are also members of the Institute of Fundraising and use their codes of practice as a guideline to our fundraising to ensure best practice. We will always abide by our supporter promise.
Special categories of personal data
We hold some medical information on persons affected by lymphoma for the purpose of providing the appropriate information to you. This is only retained for this purpose, and is restricted to staff providing information and support services. Aggregated, anonymised reports are made from this data to inform service development and strategy.
If you have agreed to provide a case study, we will hold the medical information you provide as part of that. All published information will be appropriately anonymised to protect your privacy. As part of the health information standard we refresh all published material every 3 years and will ask for your consent to continue using your case study.
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. We are required to refresh your consent regularly (every two years) and will contact you to do this provided we have your initial consent. 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 and communicate with you using this information, unless you have told us otherwise. 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 and consent for us to phone you we will assume that we have your consent to call you on this number.
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 are affected by lymphoma, or are fundraising for us, often where a parent or relative is affected by lymphoma.
They help us analyse how many people are visiting our website, what areas are popular, or not, and help us improve our website to meet your needs. The Information collected includes your IP address, location, browser type, how you found us, length of visit, number of pages viewed and how you navigated around our website.
We only use this information for statistical analysis, and do not get any personal data from it. Cookies do not give us access to your computer or any information on it.
Third party cookies are used by the services we use in our website, such as YouTube for videos and the Live Chat service.
You can choose to accept or decline cookies. You may need to change the settings of your browser to do this. Overall, cookies help us provide you with a better website and we hope you will be happy to have them from our website.
How we keep your information safe
We use appropriate security measures to keep information safe and 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 contract with us.
We do not share your information with other charities, nor do we sell your data on. Where we hold joint events with other charities, if they are the main organiser your information will be processed and held by them, not by us, and vice versa. Similarly, if we promote someone else’s event, they will hold your information, not us.
If you request a copy of the information we hold on you (via a 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. If we were to do so, it would require explicit agreement by our trustees, and be subject to rigorous risk assessment and contractual requirements to ensure safe and secure processing in line with UK data protection legislation.
Keeping your information
The information you provide will be retained by us in accordance with the applicable law. We set retention periods for all personal information based on how long it is legitimately needed to run the charity and legal requirements. 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 statement)
- Request a copy of the information we hold about you (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 for HMRC or legal purposes)
- Withdraw consent, wherever it is the basis for our use of your information
- Object to any automated processing we are doing of your information
And you have the right of judicial review if you feel we have refused a legitimate request about the above.
How to contact us
Lymphoma Action can be contacted by email at firstname.lastname@example.org, by post Lymphoma Action, 3 Cromwell Court, New Street, Aylesbury, Bucks, HP20 2PB or by phone 01296 619 400.
What to do if you are not happy
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 help line 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.