Spinal Research promises to respect any personal data you share with us, or that we get from other organisations, and keep it safe. We aim to be clear when we collect your data and not do anything you wouldn't reasonably expect.
Developing a better understanding of our supporters through their personal data allows us to make better decisions, fundraise more efficiently and, ultimately, will help us change the future of spinal cord injury. We have made improvements to this policy to make it more understandable to supporters.
Our marketing communications include information about our latest breakthroughs, campaigns and life-changing research. If you would like to opt in to receive these communications or change your current preferences then please contact us on: firstname.lastname@example.org or call us on 020 7653 8935.
Where we collect information about you from
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 for one of our events, tell us your story, make a donation, purchase our products 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 available publicly
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. The information we get from other organisations may depend on your privacy settings or the responses you give, so you should regularly check them. This information comes from the following sources:
Third party organisations You may have provided permission for a company or other organisation to share your data with third parties, including charities. This could be when you buy a product or service, register for an online competition or sign up with a comparison site.
Social media 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 available publicly This may include information found in places such as Companies House and information that has been published in articles/ newspapers.
• When we collect it as you use our websites or apps
In addition, the type of device you’re using to access our website or apps and the settings on that device may provide us with information about your device including what type of device it is, what specific device you have, what operating system you’re using, what your device settings are, and why a crash has happened. Your device manufacturer or operating system provider will have more details about what information your device makes available to us.
What personal data we collect and how we use it
The type and quantity of information we collect and how we use it depends on why you are providing it.
If you support us, for example make a donation, volunteer, register to fundraise, or sign up for an event, we will usually collect:
- Your name
- Your contact details
- Your date of birth
- Your bank or credit card details.
Where it is appropriate we may also ask for:
- Information relating to your health (for example if you are taking part in a high-risk event)
- Why you have decided to donate to us. We will never make this question mandatory, and only want to know the answer if you are comfortable telling us.
We will mainly use your data to:
- Provide you with the services, products or information you asked for
- Administer your donation or support your fundraising, including processing gift aid
- Keep a record of your relationship with us
- Ensure we know how you prefer to be contacted
- Understand how we can improve our services, products or information.
If you enter your details onto one of our online forms, and you don’t ‘send’ or ‘submit’ the form, we may contact you to see if we can help with any problems you may be experiencing with the form or our website.
We may also use your personal information to detect and reduce fraud and credit risk.
Building profiles of supporters and targeting communications
We use profiling and screening techniques to ensure communications are relevant and timely, and to provide an improved experience for our supporters. Profiling also allows us to target our resources effectively, which donors consistently tell us is a key priority for them. We do this because it allows us to understand the background of the people who support us, and helps us to make appropriate requests to supporters who may be able and willing to give more than they already do. Importantly, it enables us to raise more funds, sooner, and more cost-effectively, than we otherwise would.
When building a profile, we may analyse geographic, demographic and other information relating to you in order to better understand your interests and preferences to contact you with the most relevant communications. In doing this, we may use additional information from third party sources when it is available. Such information is compiled using publicly available data about you, for example addresses, listed Directorships or typical earnings in a given area.
With your consent, we will contact you to let you know about the progress we are making and to ask for donations or other support. Occasionally, we may include information from partner organisations or organisations who support us in these communications. We make it easy for you to tell us how you want us to communicate, in a way that suits you. Our forms have clear marketing preference questions and we include information on how to opt out when we send you marketing. If you don’t want to hear from us, that’s fine. Just let us know when you provide your data or contact us on 020 7653 8935 or email@example.com
We do not sell or share personal details to third parties for the purposes of marketing. But, if we run an event in partnership with another named organisation your details may need to be shared. We will be very clear what will happen to your data when you register.
Sharing your story
Some people choose to tell us about their experiences with spinal cord injury to help further our work. They may take on a role as an Ambassador or Media Volunteer, attend our patient-focused events or sit on our committees. This may include them sharing sensitive information related to their health and family life in addition to their biographical and contact information.
We use some of the information provided, including gender, ethnicity or the type of injury people have, to target opportunities to get involved. We will also monitor the types of people who are involved to ensure that the views we hear are representative of all people affected by spinal cord injury.
If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report.
We collect and manage information from children, and aim to manage it in a way which is appropriate to the age of the child. Information is usually collected when children attend our events or fundraise for us.
Where possible and appropriate we will seek consent from a parent or guardian before collecting information about children. Our events have specific rules about whether children can participate, and we‘ll make sure advertising for those events is age appropriate.
How we keep your data safe
We ensure that there are appropriate technical controls in place to protect your personal details. For example, our online forms are always encrypted and our network is protected and routinely monitored.
We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff, volunteers and contractors.
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, especially regarding how they manage the personal data they have collect or have access to.
Some of our suppliers run their operations outside the European Economic Area (EEA). Although they may not be subject to same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law. By submitting your personal information to us you agree to this transfer, storing or processing at a location outside the EEA.
We may need to disclose your details if required to the police, regulatory bodies or legal advisors.
We will only ever share your data in other circumstances if we have your explicit and informed consent.
Keeping your information up to date
Where possible we use publicly available sources to keep your records up to date; for example, the Post Office’s National Change of Address database and information provided to us by other organisations as described above.
We really appreciate it if you let us know if your contact details change.
Your right to know what we know about you, make changes or ask us to stop using your data
You have a right to ask us to stop processing your personal data, and if it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event) we will do so. Contact us on 020 7653 8935 or firstname.lastname@example.org if you have any concerns.
You have a right to ask for a copy of the information we hold about you. If there are any discrepancies in the information we provide, 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, Spinal Research, 80 Coleman Street, London, EC2R 5BJ. We do not accept these requests by email so we can ensure that we only provide personal data to the right person.
Changes to this policy
If you have any questions, comments or suggestions, please let us know by contacting us at, Spinal Research, 80 Coleman Street, London, EC2A 5BJ or email email@example.com
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If you are 16 or under, you must get your parent or guardian’s permission before you provide any personal information on the Spinal Research website.