The Trustees of Vasculitis UK have reviewed the implications of the General Data Protection Regulations 2018 and have updated the charity’s Privacy procedures.
The main points are:
- The charity will ask members for consent to hold their personal details in a database and to send them newsletters, emails and other information relevant to vasculitis and Vasculitis UK.
- The charity does not pass your personal details on to any other group inside or outside of the UK.
- The charity would always ask if members want to take part in any research.
- The charity does not carry out any personal profiling.
- The charity does not engage in any direct or tele-marketing.
- The charity will protect your personal details, where necessary, by encryption and password.
What does this mean in practice?
Vasculitis UK Privacy Procedures.
Vasculitis UK is committed to protecting your personal information and being transparent about what we do with it, no matter how you interact with us. That’s whether you volunteer for us, join as a member, fundraise, donate, buy from our shop, or ask for information or help through our helpline.
We won’t do anything with your information you wouldn’t reasonably expect. We only hold information you have agreed and consented to pass to us. Whether, that’s as a member, using the membership form, or have otherwise consented to receive a newsletter and other vasculitis related information or as a fundraiser and donor where we hold your details for up to 2 years after the event.
How and when we collect information about you
When you interact directly and give us your information this may be collected and stored and you will have given your consent. For example, this could be when you:
- join as a member or volunteer
- Support our work through a donation including gift aid.
- fundraise on our behalf
- register for or attend an event
- tell us your story for the newsletter
- phone or email our helpline
- direct message us on our social media channels
- buy from our shop (online)
You may indirectly give us information through interaction with us on social media platforms such as Facebook, Twitter or Health Unlocked. We may also obtain some personal information about you.
The information we receive will depend on the privacy preferences you have set on each platform and the privacy policies of each platform. We do obtain information about visits to our website, for example how many people visit the site and the pages which are most visited. This tells us which pages have been viewed and how frequently. It does not give us information about any individual.
Data protection law recognises that certain types of personal information are more sensitive. This is known as ‘sensitive’ or ‘special category’ personal information. We only ask about your health conditions and treatment, and possible research criteria. We do not ask about racial or ethnic origin, religious or philosophical beliefs and political opinions, trade union membership, genetic or biometric data, or data concerning a person’s sex life or sexual orientation.
If you’re aged 18 or under, you must get your parent/guardian’s permission before you provide any personal information to us. You must be 18 or over to become a member of Vasculitis UK.
How and why we use your information
We will use your personal information for the following purposes:
- Donation processing: We will process personal information you provide in order to administer any one-off or on-going donations you make and claim Gift Aid.
- Responding to a request: If you contact us with a query, we may use your personal information to provide you with a response.
- Fundraising or direct marketing: We only respond to you contacting us by email, phone or Just Giving etc. in order to begin fundraising, and thereby consent to being contacted. We do not partake in any direct marketing.
Sharing of information
We will only use your information for the purposes for which it was obtained such as to send shop items from the supplier. We will not, under any circumstances, sell or share your personal information with any third party for their own purposes, and you will not receive marketing from any other companies, charities or other organisations as a result of giving your details to us.
We may occasionally contact members to see if they are willing to take part in research studies, usually by means of a questionnaire. These research studies will be undertaken by established clinical research professionals carrying out research which has received ethical approval. Members are under no obligation to take part in such studies and may decline or ignore the invitation.
Protecting your information
The shop uses Paypal so we never have sight of your banking details. The same with donations these are dealt with by the online organisations. If you donate by cash then our finance team process the gift aid using the information given. They may receive a request from HMRC to confirm those details.
We understand that additional care may be needed when we collect and process the personal information of vulnerable members, supporters and volunteers. In recognition of this, we observe good practice guideline in our interactions with vulnerable people.
How long will we keep your information?
We will keep your personal information in respect of financial transactions for as long as the law requires us to for tax or accounting purposes.
In respect of other personal information, for membership we will retain the information while you continue as a member or until you tell us otherwise. For fundraisers we will retain it for no longer than necessary for the purposes for which it was collected, taking into account guidance issued by the Information Commissioner’s Office.
International transfers of information
We will not pass your information outside of the UK. Occasionally we may be asked to provide research information but this would either be anonymised or consent would be sought.
Your rights to your personal information
Data protection legislation gives you the right to request access to personal information about you which is held by the Vasculitis UK and to have any inaccuracies corrected. You also have the right to ask us to erase your personal information.
The various support groups are independent of Vasculitis UK and will maintain their own records and privacy statements.
To make a complaint or raise a concern
If you would like more information, or have any questions about this policy, to make a formal complaint about our approach to data protection or raise privacy concerns please contact by:
Email: [email protected]
Phone: 0300 365 0075
Post: West Bank House, Winster, Matlock, Derbyshire, DE2 4DQ
Subject: Access request
The Data Protection Act 1998 gives you the right to access the personal data relating to you that the Vasculitis UK hold. This is known as a Subject Access Request (SAR). Please contact us giving proof of identity (eg Driving Licence) and we will tell you what we hold.
Policy Date: May 2018