Privacy Policy

This privacy notice sets out the way we process your information and details. We’ll keep this policy updated to show you how we use your personal information so that you can be confident when sharing your information with us that it will only be used for what we say here. You may also like to read our Supporter Promise. We believe that developing a better understanding of our supporters through their personal data will help us make better decisions and enable us to raise more money for medical research.

Who are Action Medical Research

We are Action Medical Research a UK charity saving and changing children’s lives through medical research. Our registered charity numbers are 208701 in England and Wales, and SC039284 in Scotland. We are also registered as a company in England and Wales under registration number 549089.

Legal basis and legitimate interest

When Action collects and processes your personal information we will do this according to at least one of the legal grounds permitted in Data Protection law. The typical methods we will be relying on are:

• Where you have given your consent. For example, this may have been consent provided by you when you signed up to take part on one of our events.
• Where we are fulfilling a contract. For example, if you have purchased an item from the charity.
• Where we have a legal obligation. For example, if you have generously agreed to gift aid a donation.

In certain instances, we may collect and use personal information where this is necessary in our legitimate interest as a charity, this includes being able to:

• send direct marketing material to individual supporters by post or contacting them by telephone for fundraising purposes (subject to checking against the Telephone Preference Service and any existing marketing preferences).
• Send direct marketing materials to corporate supporters by post, email or contacting them by telephone for fundraising purposes (subject to checking against the Telephone Preference Service and any existing marketing preferences).
• maintain and administer our donor database and systems.

In all cases, we balance our legitimate interests against your rights as an individual and make sure we only use personal information in a way or for a purpose that you would reasonably expect in accordance with this Policy and that does not intrude on your privacy or previously expressed marketing preferences.

What information do we generally collect?

This will depend on the nature of your interaction with Action Medical Research but is likely to include some of the following information. This information may be collected from post, digital sources such as our website or social media sites, telephone or SMS.

• Name
• Contact details – postal address, telephone number
• Date of birth – if required for legal reasons eg to take part in our lottery or for safety reasons to take part on one of our challenge events
• Email address
• Social media details
• Bank account details – where you are entering into an agreement to make a regular donation or payment to the charity we may need your bank details. Where we ask you to make a payment on our website the charity does not record this information and it is not stored on our systems.

Payment processing online of debit and credit card payments are managed externally by third party payment providers on behalf of the charity.

If you are taking part in one of our Action events, we may require additional information such as emergency contact information collected by our agent as part of our registration process. We will only use this information in the event of an emergency.

We may also receive your information indirectly from independent fundraising sites such as Just Giving or Virgin Money Giving. These companies will only provide details if you have given them permission to do so. We may also receive your information from event registration sites that we use for Action events, such as Active Networks. Please check their privacy policy to see how they process your information.

What do we do with the information you supply?

We use the information you supply to:

• Fulfil and administer orders for goods, services and events
• Administer donations, legacies and other gifts
• Communicate with you about the work of the charity, its fundraising and other areas that we think may be of interest to you
• Comply with a legal duty

We want to provide a positive experience for you, as well as use our resources effectively. Therefore we may also:

• Use profiling or screening techniques to help us ensure communications are relevant and timely. When building a profile, we (or trusted third party providers) may look at how you have supported us in the past, as well as analysing geographical, demographic and publicly-available information about you such as your age, listed directorships or your estimated wealth, to understand how likely it is you would be interested in supporting further.
• Use information about you from publicly available sources such as websites, media or social media, online registries or personal introductions, to understand more about your interests and preferences so that we can tell you about areas of our work or ways to get involved with the charity that are most relevant to you.
• Contact you if you complete but don’t submit an online form to see if we can assist with any problems you may be having with our website.
• Analyse how visitors use our website to improve the user experience of website visitors.
• Use publicly available sources to keep your records up to date; for example, the Post Office’s National Change of Address database.

You can request for us not to use your information in this way by contacting dpofficer@action.org.uk with your request and we’ll ensure that your wishes are respected.

Who do we share information with?

Action Medical Research will not disclose any of your personally identifiable information, except:

• where we need to use an external company to collect or process your personal data on our behalf, for example to administer your regular gift, (see ‘We will keep your information safe’ for more information)
• to make submissions to HMRC to claim gift aid on eligible donations
• when we are working with tour operators who administer an event on our behalf or under special circumstances when we believe in good faith that the law requires it.

How long do we retain information?

We hold your information only as long as necessary for each purpose we use it.  

For example:

• Under current HMRC rules we will need to retain your gift aid declarations and details of any gifts for six years after the date of your last gift to the charity.
• Emergency contact information is only held for up to 28 days after the event has been completed then this information is removed from our systems.
• For marketing and fundraising purposes we would balance the charity’s legitimate interest to contact you about our work - based on your recency of support and level of engagement with the charity - with your rights as an individual to be forgotten.
• If you request that we stop sending you marketing materials we may if you agree keep a record of your contact details and appropriate information to enable us to comply with your request not to be contacted by us. 

Marketing and fundraising

You are in control and you can change your preferences at any time, but we hope that you will find our communications useful and informative. You can decide not to receive communications or change how we contact you at any time. If you wish to do so please contact Supporter Services by emailing supportercare@action.org.uk or by writing to Supporter Services, Action Medical Research, 5th Floor, 167-169 Great Portland Street, London, W1W 5PF or telephoning 01403 210406 (Lines open 9am – 5pm, Mon – Fri).

What do we mean by marketing?

Marketing does not just mean offering things for sale, but also includes news and information about:

• The work supported by Action Medical Research.
• Volunteering opportunities and how you can help Action.
• Appeals and fundraising (including donations and also competitions, raffles etc).
• Our events, activities and local groups.
• Leaving a legacy.

When you receive a communication, we may collect information about how you respond to or interact with that communication, and this may affect how we communicate with you in future.

Fundraising

As a charity, we rely on donations and support from others to help us fund the very best medical research for sick babies, children and young people.  From time to time, we will contact supporters and volunteers with fundraising material and communications. This might be about an appeal, a competition we’re running, or to suggest ways you can raise funds (eg a sponsored event or activity).

We will only contact you about getting involved in this way if you have either given your consent or if there is a balanced legitimate interest to do so. See 'Legal basis and legitimate interest' section for more information, in this privacy policy.

We will keep your information safe

We are committed to keeping your personal data safe and secure and we take all necessary steps to make sure your details are held securely. We will never sell or swap your information with other charities or organisations.

Action Medical Research uses industry standard efforts to safeguard the confidentiality of your personally identifiable information on our website, such as firewalls and Secure Socket Layers. We make every effort to protect the loss, misuse, and alteration of the information under our control. In addition, we always use a secure connection when collecting personal financial information from you. However, no data transmission over the Internet can be guaranteed to be 100 percent secure.

We also do everything in our power to protect your information off-line, and only authorised personnel can view your data.

When we use external companies to collect or process personal data on our behalf we do comprehensive checks on these companies before we work with them, and put a contract in place that sets out our expectations and requirements.   

We may need to disclose your details if required to the police, regulatory bodies or legal advisors. 

We are registered with the Fundraising Regulator and follow the standards outlined in the Code of Fundraising Practice set by the Fundraising Regulator.

Website cookies

When visiting the Action Medical Research website, cookies are used to store certain information to make the site function and improve your overall experience of our site. Further information can be found in our Cookies Policy.

Website links to third parties

We cannot be held responsible for the privacy policies of third party websites and we advise users to read the privacy policies of other websites before registering any personal data.

Social media

We use social media to help with marketing and fundraising. We will only ever use social media platforms in accordance with their own terms and conditions. If you have an account on a social media platform such as Facebook, Instagram or Twitter you will have agreed to these terms and conditions. Social media platforms must comply with data protections laws when processing or storing individuals’ personal data in the UK and Ireland. They have a responsibility, under law, to store and process data in a fair and transparent way.

Where you have agreed to receive email marketing communications from us, we may upload your email address (in an encrypted format) to social media platforms such as Facebook, Instagram or Twitter. If the email address we hold for you does not match the email address that you have registered with Facebook it will be deleted. This enables us to display adverts to our existing supporters when they visit those digital platforms for events or fundraising opportunities that we think are relevant. It also helps us to avoid promoting adverts that are less relevant – for example if you have already signed up to take part in an event, we won’t continue to display adverts for the same event. It also helps us identify audiences with similar interests to yours. This activity helps us to assign our marketing and fundraising costs more effectively.

If you don’t want to receive this type of targeted advertising on social media, you can opt out at any time by emailing dpofficer@action.org.uk or calling 01403 210406. Please note that if you do choose to opt out, it will not stop our adverts being shown to you on a randomised basis. You are able to control your ad preferences within the platforms themselves and adjust your privacy settings on your social media account.

Keeping your information up to date

The accuracy of your information is really important to us. We want to ensure that we are able to communicate with you in ways that you are happy with, and to provide you with information that is of interest. If you wish to change how we communicate with you, or update the information we hold, then please contact us:

• Email us at: supporterservices@action.org.uk
• Write to us at: Supporter Services, Action Medical Research, 5th Floor, 167-169 Great Portland Street, London, W1W 5PF.
• Call us on: 01403 210406 (Mon-Fri 9am-5pm).

You may also choose to stop receiving further emails from the charity at any time by clicking the unsubscribe link at the foot of marketing emails from the charity, but please be aware we will still email you with updates about any charity events that you have registered to take part in, so that you have latest joining and safety information.

Right of access and correction of your information

You have a right to ask for a copy of the information we hold about you.  If you spot any mistakes, please let us know and we will correct them.

If you want to access your information, send a description of the information you want to see and proof of your identity by post to Supporter Services, Action Medical Research, 5th Floor, 167-169 Great Portland Street, London, W1W 5PF, or email to dpofficer@action.org.uk

For further information see the Information Commissioner’s guidance

Changes to this Policy

We may change this Privacy Policy from time to time.  If we make any significant changes in the way we treat your personal information we will make this clear on the Action Medical Research website or by contacting you directly.

This policy was last updated on 5 January 2023