How we use information about supporters

Personal data – what is it?

Your personal data is information that identifies you; such as your date of birth or your address or describes you and reveals something about you, for example your health information, company email address or your opinions. If you have engaged with the Society previously, we will hold information about this, for example what campaigns you have joined, whether you are a dementia friend and/or if you have raised funds for us.

However we are connected, Alzheimer’s Society will respect your privacy and your rights and only process information about you where it has a legitimate need to do so.

How we use your information

To help you take action

Where you sign up to take part in an event or a campaign or donate money to the Society, we will collect, hold and use your information to help you undertake that action. This may mean contacting you with information about the action, or sending you resources to help you take part. We do so to ensure you have the best experience possible, we fulfil our agreed commitment to you and the aim of the action is achieved.

Sometimes we may ask for more information about you, such as your profession or age. You do not always have to provide this, but, if you choose to, it helps us to personalise news or updates which may be interesting to you and also to assess the effectiveness of our campaigns and awareness materials.

When you sign up to take part in activities, we may ask you to provide information to enable us to provide a safe and suitable environment for you. For example, if the activity involves some risk or physical exertion (such as fundraising treks), you may be asked to provide some information about your health. If as part of an event we will be providing you with food, we may ask you to disclose any dietary requirements you would like us to cater for so you have the best experience possible.

To send you information about future ways you can take action

By supporting us, you're doing something incredible to help thousands of families affected by dementia. We'd love to keep in touch, and update you on the latest news, including the amazing work we do with our services and research, and how you can do more to help with fundraising, campaigning, or volunteering.

With your consent we will keep you up to date with our news by email, SMS, telephone or social media and let you know how you can continue to support us and take part in future action.

In order to support our fundraising and charitable activities, we may also keep you up to date by mail. You can, of course, let us know any time you no longer want to receive these letters or change your preferences.

To promote the work of the Society

It makes a difference if, when explaining the work of the Society, we can use real-life stories and information to bring this to life and show the impact of dementia and how individuals are uniting together to take action.

For this purpose we may take photographs or footage at Society events to use in future marketing materials. Where this is going to happen, you will be informed at the start of the event and given the opportunity to choose not be photographed.

Where information is collected that clearly identifies you (for example, a picture where you are the focus of your story), we will explain beforehand that we’d like to do this and what it will be used for and ask you if you are happy for us to use it for these purposes. You will be given regular opportunities to confirm you are still happy for your information to be used and we won’t use your information in any different way without your agreement..

Anonymous statistics about supporters’ participation may be created from the information you provide and shared with relevant and appropriate partners. This will be done to highlight the work of the Society and size of the movement for change.

To analyse the effectiveness of our work

As a charity, it’s really important to us that we ensure we are spending our money and resources effectively and efficiently. For that reason, we may analyse the details you have provided us along with further information about you that we have obtained from public and/or private sources. In some instances we may make use of additional factors such as demographic information and measures of wealth to help us better understand the persona of our supporters.

We do this to help us understand why people are motivated to support Alzheimer's Society, and to help us create a fuller and better picture of our supporters. This enables us to communicate with our supporters more effectively and appropriately, and to reach out to individuals who may wish to give additional support with a further monetary gift or volunteer their time/services.

We may contact you and ask you to take part in market research opportunities or ask for feedback. Participation is completely voluntary but it enables us to know what we are doing well, but equally what you feel we could be doing better. This will help us ensure what we are offering as opportunities for people to get involved is relevant, appropriate and helps us in achieving our goal of creating a word without dementia. You can opt out of being contacted about market research at any time by contacting us.

If you tell us that you have dementia

We may ask supporters what their relationship to dementia is, for example when you sign up for an event, or make a donation. 

If you choose to share this information with us, it helps us to communicate better with you. We may also analyse your response to understand our supporters better and send more relevant messages about our work and reach more people in the future.

If you have told us that you have dementia you will have agreed that we can use your health information in these ways. 

If you later change your mind about us holding that information about you, you can ask us to update or remove it at any time by calling Supporter Care on 0330 333 0804 or email [email protected].
 

Sharing your information

Alzheimer’s Society does not sell your information to other charities or organisations.

The Society does use suppliers to help us fulfil orders and engage with you. We may also share your personal data with other third parties who provide a service to us. This includes trusted partners that work with us in connection with maximising our gift aid, for example organisations with whom you’ve signed a universal gift aid declaration. We’ve undertaken due diligence on all these organisations and have entered into contracts requiring them to only process your information for the purposes we instruct them to and in a safe manner.

If you sign up to take part in an event which is hosted or organised by a third-party, the Society may need to share relevant information with them which is necessary to help ensure your safe participation.

If you sign up to take part in an event through a corporate partnership with your employer, limited depersonalised information may be shared about your involvement with them.

With your consent, the Society may pass your information on to media organisations to use to promote the work of the Society.

The Society may need to share information with government agencies where we have a legal obligation to do so (for example, with HMRC for gift aid purposes).

Alzheimer’s Society will not share your information with any other organisation without your consent other than under the following circumstances:

• With the organisers of events you’re attending as long as it is justified and lawful;
• If we are required to by law e.g. to the police if we agree it is essential to the prevention or detection of a crime;
• If we feel it is in the vital interests of yourself or another person for example in a medical emergency.

We believe making a difference to people living with or affected by dementia should be acknowledged and rewarded.

We nominate people for awards or honours where they have made a significant difference and we may share relevant information about them with bodies and organisations to support the nomination.

For some external awards or honours the nominating organisation is asked not to inform the person being nominated.

Receiving information from third parties

Alzheimer’s Society will only receive information from third parties about you in the following circumstances:

• Where you have donated money via a third party platform
• If you have signed up for a third-party event and are raising money for Alzheimer’s Society
• Aggregated information about you (for example your age range) collected from publically available sources
• Information that you have place in the public domain

Where this is the case, or in any unique circumstance not covered by the list above, we will ensure you know this has happened and explain what kind of information the third party has given to us.

Storing your information

We keep your information only as long as is needed for the purpose we were collecting and using it for and then we dispose of it securely. Alzheimer’s Society has a robust Schedule for securely holding and disposing of supporter information. How long we keep your information depends upon our relationship with you.

The record we keep of your interaction with the Society as a supporter will be kept for up to ten years from the date of our last engagement with you. After this point, your record will be anonymised so you are not able to be identified from the information held.

Some information sets not kept in our supporter database (for example, event registration forms) will be kept for less time. Once the business need to keep information has passed, the Society will ensure that it either disposes of this information, or anonymises the information so that you cannot be identified any more

If you ask us to stop sending you direct marketing material, we will need to keep limited contact information about you to make sure we do not mistakenly send you direct marketing in the future. We’ll keep this limited information for 10 years.

Where is your information held?

We hold most information on our central IT system which meets international security standards. Some information may be kept in a paper record format, but where possible this will be transferred to an electronic record and the paper record securely disposed of.

Where we use other organisations to help us operate they may hold information outside the UK. However, where this is the case we make sure that your rights are protected through engaging in appropriate due diligence and robust contract management

If you support the Society by donating money, we have to keep records of this in our accounts for 7 years.

Security and confidentiality

Alzheimer’s Society takes care to ensure the security of your information in use, storage and transmission and that it is only accessed by verified persons who have the necessary authority. All of our people who have access to your personal information are obliged to respect the confidentiality of this information and we deliver training to make sure this happens

Your consent

If we are using your personal information on the basis of your agreement then at any time you can withdraw your consent, by telephone, email or letter, and we will not carry out any further processing on that basis.

Further rights

If you wish to receive a copy of your personal information or ask us to correct the information we hold about you, to stop using your information or to delete some or all of it, then please contact the Information Governance Team using the details below.

How to contact us

If you wish to receive a copy of your personal information or ask us to correct the information we hold about you, to stop using your information or to delete some or all of it, then please contact the Information Governance Team using the details below.

• by phone to Customer Care on 0330 333 0804
• in writing to Customer Care, Alzheimer's Society, Suite 2, 1st Floor East Wing, Plumer House, Tailyour Road, Plymouth, PL6 5DH
• by email to [email protected]

You can also fill in an online form for general enquiries.

If you wish to receive a copy of your personal information or ask us to correct the information we hold about you or to stop using your information then please contact the Information Governance Team at:

Information Governance Team
Alzheimer's Society
Suite 2
1st Floor East Wing
Plumer House
Tailyour Road
Plymouth
PL6 5DH

You can also email our team at [email protected]

Complaints

If you are unhappy with how we are processing your information then you can contact us as outlined above including using the on-line feedback form. If you are still unhappy after receiving our response, you can raise your concern to the Information Commissioner’s Office for them to investigate. 

If you live outside the UK in Guernsey, please contact Guernsey Data Protection Authority, or if you live in the Isle of Man, please contact Isle of Man Information Commissioner.