The Cure Parkinson’s Trust (“we”) 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 use your data in a way you wouldn’t expect. Developing a better understanding of our supporters through their personal data allows us to make better research decisions, fundraise more efficiently and ultimately, help us to reach our goal of finding a cure for Parkinson’s.
We only send marketing communications to those who have already given consent or through legitimate interest and we communicate via their preferred channel(s) (email or post). In all direct marketing and postal communication we offer ‘opt out’ preferences and ‘opt in’ for email communication.
Our marketing communications include information about our latest research and fundraising to fulfil our aim to slow, stop or reverse Parkinson’s. If you would like to receive such communications but have not let us know, please contact us on 0207 487 3892 or email@example.com.
Where we collect information about you from
We collect information in the following ways:
When you engage or give 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, make a purchase on our online shop, fundraise for us (directly), sign up on our website, communicate or meet with us. We are responsible for your data at all times.
When you give to us indirectly
Your information may also be shared with us through introductions for example through a CPT supporter or Trustee.
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 including but not limited to Farewill, ebay or christmascards.org.
• Social Media
Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp, Twitter or LinkedIn, 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, the Charity Commission 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. 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
Personal information is any information that can be used to identify you. For example, it can include information such as your name, date of birth, email address, postal address, telephone number and credit/debit card details, as well as information relating to your health or personal circumstances.
Data protection law recognises that certain categories of personal information are more sensitive. This is known as special categories and covers the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person’s sex life or sexual orientation shall be prohibited. We would only collect sensitive personal information where there is a clear need to do so such as participation in a challenge event, to ascertain what services are relevant to you or to cater other support to you. Before collecting any sensitive personal information from you we will always make it clear to you what sensitive personal data we are collecting and why. We will also ask for your consent to store and retain this data.
We may collect sensitive personal data if you make the information public or if you tell us about your experiences relating to Parkinson’s. Where it is appropriate we may also ask 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 and information
• If you enter your details onto one of our online forms, online shop, or donate online 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 websites.
• Building profiles of supporters and targeting communications
We use research, screening and profiling 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. We do this because it allows us to understand the background of the people who support us and help 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 in order to contact you with the most relevant communications.
With your consent from time to time 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 that 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 and we will only contact you by email, phone or SMS with your consent. 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 7487 3892 or firstname.lastname@example.org.
We do not sell or share personal details to third parties for the purposes of marketing. If we run an event in partnership with another named organisation your contact details will not be shared but names may be provided for administrative purposes e.g. registration/security. 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 Parkinson’s to help further our work. They may take on a role as an Ambassador or 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 monitor the types of people who are involved to ensure that the views we hear are representative of all people affected by Parkinson’s. If we have the explicit involvement and informed consent of the individuals, 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.
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 bi annual postal publications (annual review and newsletter) or our monthly e-news.
Information is usually collected when children attend our events or fundraise for us. If you are under 18 and would like to get involved, please ensure that you have consent from a parent or guardian before giving us your personal information. When we collect information about a child or young person aged under 18 we will make it very clear as to the reasons for collecting this information and how it will be used. Where possible and appropriate we will seek consent from a parent or guardian before collecting information about children.
How we keep your data safe and who has access to it
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 sometimes 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 collected or have access to.
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.
We keep your personal information only for as long as required to operate the service in accordance with legal requirements and tax and accounting rules. Where your information is no longer required, we will ensure it is disposed of in a secure manner.
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 7487 3892 or email email@example.com if you have any concerns.
You have a right to ask for a copy of the information we hold about you, and we will endeavour to provide you with information within 10 working days from your request. 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 The Cure Parkinson’s Trust, 120 Baker Street, London, W1U 6TU. We do not accept these requests by email so we can ensure that we only provide personal data to the right person.
If you have any questions please send these to firstname.lastname@example.org, and for further information see the Information Commissioner’s guidance here https://ico.org.uk/make-a-complaint/your-personal-information-concerns/
Changes to this policy
If you have any questions, comments or suggestions, please let us know by post – The Cure Parkinson’s Trust, 120 Baker Street, London, W1U 6TU or email email@example.com