We’ll keep this page updated to show you all the things we do with your personal data. This policy applies if you’re a supporter of Epilepsy Research Institute (fundraiser, donor, volunteer, customer, employee) or use any of our services, visit our website, email, call or write to us. In certain circumstances we may also provide an extra privacy notice, which will always refer to this page.
We’ll never sell your personal data and will only share it with organisations we work with when it’s necessary and the privacy and security of your data is assured.
In this policy, whenever you see the words ‘we’, ‘us’, ‘our’, ‘ERIUK’, it refers to Epilepsy Research Institute UK (ERIUK).
Epilepsy Research Institute UK (registered charity number 1100394) is a charitable organisation and is the only national charity that is exclusively dedicated to funding independent medical and scientific research into the causes, treatments and prevention of epilepsy. Epilepsy Research Institute UK is a company limited by guarantee registered in England, registered company number 4873718.
Your personal data (any information which identifies you, or which can be identified as relating to you personally for example, name, address, phone number, email address) will be collected and used by us. We’ll only collect the personal data that we need.
We collect personal data in connection with specific activities such as donations, entering an event, placing an order, volunteering, conducting research, employment etc.
You can give us your personal data by corresponding with us via letter, phone or email, filling in forms on our website or subscribing to social media functions.
This personal data you give us may include name, title, address, date of birth, age, gender, demographic information, email address, telephone numbers or photographs.
This includes information you give when interacting with us, for example subscribing to our newsletter, registering for an event, making a donation, placing an order or communicating with us. For example:
We may automatically collect the following information:
Your activities and involvement with us will result in personal data being created. This could include details of how you’ve helped us by fundraising, volunteering or being involved with our other activities. If you decide to donate to us then we’ll keep records of when and how much you give.
We may conduct research and analysis on the information we hold, which can in turn generate personal data. For example, by analysing your interests and involvement with our work we may be able to build a profile which helps us decide which of our communications are likely to interest you. The sections Research and Profiling gives more detail about how we use information for profiling and targeted advertising, including giving you more relevant digital content.
If you’re a volunteer then we may collect extra information about you (e.g. references, criminal records checks, details of emergency contacts, medical conditions etc.). This information will be retained for legal or contractual reasons, to protect us (including in the event of an insurance or legal claim) and for safeguarding purposes.
We’ll only use your personal data on relevant lawful grounds as permitted by the EU General Data Protection Regulation/UK Data Protection Act and Privacy of Electronic Communication Regulation.
Personal data provided to us will be used for the purpose or purposes outlined in any fair processing notice in a transparent manner at the time of collection or registration where appropriate, in accordance with any preferences you express. If asked by the police, or any other regulatory or government authority investigating suspected illegal activities, we may need to provide your personal data.
Your personal data may be collected and used to help us deliver our charitable activities, help us raise funds, or complete your order or request. Below are the main uses of your data which depend on the nature of our relationship with you and how you interact with our various services, websites and activities.
Your privacy is important to us, so we will always keep your details secure. We’d like to use your details to keep in touch about things that may matter to you.
If you have provided us with your postal address we may send you mail, including the Focus newsletter, which will include updates about the research we’re funding, events or ways you can support us. We may also contact you about fundraising, events and trading. We do not ask for consent to write or call you about these things, because, as a charity, each of these activities is fundamental to how we work, so we have a legitimate interest to contact you. However, you will also have an option to opt-out of receiving marketing communications by post or phone.
We will only send you marketing communications by email if you have consented to receive these. You can unsubscribe at any time by clicking on the link in the email. Our mass email service allows us to track who has opened our e-newsletter and what links have been clicked on. This allows us to monitor what information is most useful to improve our content and information in future.
However, if you tell us you don’t want to receive marketing communications, then you may not hear about research developments, events or other work we do that may be of interest to you.
We will never share your information with companies for their own purposes. We may sometimes use third parties to process some of our data on our behalf, but only where we are confident that the third party will treat your data securely, in accordance with our terms and in line with the requirements set out in the GDPR.
We’d love to stay in touch, with news of all we do. You can change your contact preferences at any time by visiting epilepsyresearch.org.uk/stayintouch, emailing here or phoning 020 3882 9438. See here for more details.
We’ll always act upon your choice of how you want to receive communications (for example, by email, post or phone). However, there are some communications that we need to send. These are essential to fulfil our promises to you as a fundraiser, donor or buyer of goods or services from the Institute. Examples are:
Where it is in our legitimate interests to do so, we may invite you to support our vital research work by making a donation, getting involved in fundraising activities or leaving a gift in your will.
Occasionally, we may invite some supporters to attend special events to find out more about the ways in which donations and gifts in wills can make a difference to specific projects and to our cause. We’ll also send you updates on the impact that you make by supporting us in this way, unless you tell us not to.
If you make a donation, we’ll use any personal information you give us to record the nature and amount of your gift, claim gift aid where you’ve told us you’re eligible and thank you for your gift. If you interact or have a conversation with us, we’ll note anything relevant and store this securely on our systems.
If you tell us you want to fundraise to support our cause, we’ll use the personal information you give us to record your plans and contact you to support your fundraising efforts.
If you’ve told us that you’re planning to, or thinking about, leaving us a gift in your will, we’ll use the information you give us to keep a record of this – including the purpose of your gift, if you let us know this.
If we have a conversation or interaction with you (or with someone who contacts us in relation to your will, for example your solicitor), we’ll note these interactions throughout your relationship with us, as this helps to ensure your gift is directed as you wanted.
Charity Commission rules require us to be assured of the provenance of funds and any conditions attached to them. We follow a due diligence process which involves researching the financial soundness, credibility, reputation and ethical principles of donors who’ve made, or are likely to make, a significant donation to the Institute.
As part of this process we’ll carry out research using publicly available information and professional resources. If this applies to you, we’ll remind you about the process when you make your donation.
We need to use your personal data to manage your volunteering, from the moment you enquire to the time you decide to stop volunteering with us. This could include contacting you about a role you’ve applied for or we think you might be interested in, expense claims you’ve made, shifts you’ve booked and to recognise your contribution.
We may also share this with funders to help them monitor how their funding is making a difference.
We process customer data in order to fulfil retail activities. Your data will be used to communicate with you throughout the process, including to confirm we’ve received your order and payment, to clarify where we might need more detail to fulfil an order or booking, or to resolve issues that might arise with your order or booking.
We may from time to time carry out a survey with our supporters, staff and volunteers to get feedback on their experience with us. We use this feedback to ensure we know what is relevant and interesting to you.
If you choose to take part in a survey, we’ll tell you when you start what data we will collect, why and how we’ll use it. All our surveys are optional and you can choose not to take part. We may ask you to provide sensitive personal data (e.g. ethnicity). You don’t have to provide this data and we also provide a ‘prefer not to say’ option. We only use it at an aggregate level for reporting (e.g. equal opportunities monitoring).
We may give some of your personal data (e.g. contact information) to a research agency who will carry out research on our behalf.
We know it’s important to our supporters to use our resources in a responsible and cost-effective way. So we may use automated profiling and targeting to help us understand our supporters and make sure that:
To do this we’ll analyse how you interact with us (e.g. on our website) and use both geographic and demographic information to let you know what’s happening in your local area and understand your interests.
We use specific tools to profile how you interact with us online, for example, Google Analytics. We use Google Analytics to collect information on the use of the Institute website. Much of the information we collect is aggregated; however, we may also collect some personal data for the use of personalising your experience, optimising our marketing campaigns, and to ensure the site is functioning as intended.
We may also gather additional information about you from external sources, for example: updates to address and contact information, or publicly available information regarding your wealth, earnings and employment at an aggregate level. We may use this information to assess your capacity to support us and invite you to do so.
This analysis may be carried out by us or by third-party organisations working for us. We may also host encrypted personal data on third-party websites (e.g. social media platforms) to ensure that you only see relevant, personalised and interesting content from those organisations.
In order to comply with our contractual, statutory, and management obligations and responsibilities, we process personal data, including ‘sensitive’ personal data, from job applicants and employees.
Such data can include, but isn’t limited to, information relating to health, racial or ethnic origin, and criminal convictions. In certain circumstances, we may process personal data or sensitive personal data, without explicit consent. Further information on what data is collected and why it’s processed is given below.
Contractual responsibilities: Our contractual responsibilities include those arising from the contract of employment. The data processed to meet contractual responsibilities includes, but is not limited to, data relating to: payroll, bank account, postal address, sick pay, leave, maternity pay, pension and emergency contacts.
Statutory responsibilities: Our statutory responsibilities are those imposed through law on the organisation as an employer. The data processed to meet statutory responsibilities includes, but is not limited to, data relating to: tax, national insurance, statutory sick pay, statutory maternity pay, family leave, work permits, equal opportunities monitoring.
Management responsibilities: Our management responsibilities are those necessary for the organisational functioning of the organisation. The data processed to meet management responsibilities includes, but is not limited to, data relating to: recruitment and employment, training and development, absence, disciplinary matters, email address and telephone number.
If you have signed up to the research register, you have given consent for us to contact you regarding our research activities, such as the deadline to submit grant applications, our grant announcements, and our Researcher Bulletin.
You can unsubscribe to the Research Register at any time – simply email our Head of Research Annee Amjad requesting to be removed from this mailing list.
If you have submitted a research grant application to us, you have given consent for us to process your application. We keep unsuccessful applications for 3 years after submission, and we hold successful applications for at least 7 years after they have been accepted. Once this time has elapsed we will review whether we need to retain your application.
Researchers who work with us: Legitimate Interest
If you are currently in receipt of funding from Epilepsy Research UK, we have a legitimate interest in you. We will keep your contact details on record so that we may carry out grant administration, keep updated on the progress of your research and on your obligations to the charity.
If your research has been funded by Epilepsy Research UK in the past, we keep your information on record for at least 7 years. We have a legitimate interest in your work and so we keep track of the impact of our research and update you on your obligations to the charity. We also use Researchfish to measure the impact of our research including leveraged funding, research publications, conference presentations, etc.
Scientific Advisory Committee (SAC) members: Legitimate Interest
If you are currently a member of our SAC, we have a legitimate interest in working with you. We keep your details on record so that we may carry out the duties of the SAC, including the grant round process and other research activities of the Institute.
If you have been a member of our SAC in the past, we keep your details so that we can keep a record of SAC membership terms, and so that we do not invite you to become a member of the SAC again.
Peer reviewers: Legitimate Interest
If you are a researcher and have reviewed grant applications as part of our annual grant round, we have a legitimate interest in working with you and therefore keep your details on record for future peer reviews in your specialist area. If you would like to be removed from this list, please email Annee Amjad, our Head of Research.
The Act defines ‘sensitive personal data’ as information about racial or ethnic origin, political opinions, religious beliefs or other similar beliefs, trade union membership, physical or mental health, sexual life, and criminal allegations, proceedings or convictions.
In certain limited circumstances, we may legally collect and process sensitive personal data without requiring the explicit consent of an employee.
(a) We will process data about an employee’s health where it is necessary, for example, to record absence from work due to sickness, to pay statutory sick pay, and to make any necessary arrangements or adjustments to the workplace in the case of disability. This processing will not normally happen without the employee’s knowledge and, where necessary, consent.
(b) We will process data about, but not limited to, an employee’s racial and ethnic origin, their sexual orientation or their religious beliefs only where they have volunteered such data and only for the purpose of monitoring and upholding our equal opportunities policies and related provisions.
(c) Data about an employee’s criminal convictions will be held as necessary.
In order to carry out our contractual and management responsibilities, we may, from time to time, need to share an employee’s personal data with one or more third party supplier.
To meet the employment contract, we are required to transfer an employee’s personal data to third parties, for example, to our payroll company, pension providers and HM Revenue & Customs.
In order to fulfil our statutory responsibilities, we’re required to give some of an employee’s personal data to government departments or agencies e.g. provision of salary and tax data to HM Revenue & Customs.
Updating your data and marketing preferences
We want you to remain in control of your personal data. If, at any time, you want to update or amend your personal data or marketing preferences please contact us in one of the following ways:
Email James Matejka, Head of Communications.
Email here with your full name and full address including postcode.
020 3882 9438 (local call rates apply). Open 9.00am – 5.00pm, Monday to Friday
Epilepsy Research Institute
35 Red Lion Square
Verification, updating or amendment of personal data will take place within 30 days of receipt of your request.
Where ERIUK is using your personal data on the basis of consent, you have the right to withdraw that consent at any time. You also have the right to ask ERIUK to stop using your personal data for direct marketing purposes.
Contact us using the details above.
If you would like further information on your rights or wish to exercise them, please write to us at The CEO, Epilepsy Research Institute, Churchill House, 35 Red Lion Square, London, WC1R 4SG or email here. You will be asked to provide the following details:
We will also need you to provide information that will help us confirm your identity. If we hold personal information about you, we will give you a copy of the information in an understandable format together with an explanation of why we hold and use it.
Once we have all the information necessary to respond to your request we’ll provide your information to you within one month. This timeframe may be extended by up to two months if your request is particularly complex.
In the first instance, please talk to us directly so we can resolve any problem or query. You also have the right to contact the Information Commissioner’s Office (ICO) if you have any questions about Data Protection. You can contact them using their help line 0303 123 113 or at www.ico.org.uk.
We will only use and store your information for as long as it is required for the purposes it was collected for. How long it will be stored for depends on the information in question, what it is being used for and, sometimes, statutory legal requirements.
Information system and data security is imperative to us to ensure that we are keeping our supporters, volunteers, employees and contractors safe.
We regularly review new and existing systems to ensure that they are up to date and secure against ever-changing cyber threats.
When you trust us with your data we will always keep your information secure to maintain your confidentiality. By utilizing strong encryption when your information is stored or in transit we minimize the risk of unauthorized access or disclosure; when entering information on our website, you can check this by right clicking on the padlock icon in the address bar.
When we allow third parties acting on behalf of the Institute to access to your information, we will always have complete control of what they see, how long they see it for and what they are allowed to do with it. We do not sell or share your personal information for other organisations to use.
Personal data collected and processed by us may be shared with the following groups where necessary:
Also, under strictly controlled conditions:
The Institute’s operations are based in the UK and we store most of our data within the European Union (EU). Some organisations which provide services to us may transfer data outside the European Economic Area but we’ll only allow this if your data is adequately protected. Some of our systems are provided by US companies and whilst it is our policy that we prefer data hosting and processing to remain on EU-based solutions, it may be that using their products results in data transfer to the USA. However we only allow this when we certain it will be adequately protected. (e.g. US Privacy Shield or Standard EU contractual clauses).
The Institute has an active PCI-DSS compliance programme in place. This is the international standard for safe card payment processes. As part of our compliance to this very stringent standard, we ensure that our IT systems do not directly collect or store payment card information; for example the full 16 digit number on the front of the card or the security code on the back.
Our online payment solutions are carried out using a ‘payment gateway’ (e.g. PayPal, Stripe) which is a direct connection to a secure payment processing service provided by a company. This means that when you input card data into the payment page, you are communicating directly with the payment processing company, which passes your payment to us. Your payment card information is handled by the payment processing company and not processed or held by us.