ICP Support is committed to keeping your information secure and managing it in accordance with our legal responsibilities under the privacy and data protection laws where we operate.
Who we are and what we do
ICP Support’s objective is the relief of sickness and preservation of good health among women affected by the liver condition of pregnancy called intrahepatic cholestasis of pregnancy (ICP) also known as obstetric cholestasis (OC), in particular but not exclusively by:
- providing information and support to such women and their families;
- advancing education for the public benefit of the condition;
- promoting, supporting and raising funds for research into the condition, the useful results of which will be disseminated for the public benefit.
ICP Support is registered as a charity in England and Wales (registered charity number 1146449).
The General Data Protection Regulations (GDPR) 2018
In carrying out our day-to-day activities we process and store personal information (personal data) relating to our supporters and we adhere to the requirements of the GDPR.
We take our responsibilities under the GDPR seriously and we ensure that the personal information we obtain is held, used, transferred and otherwise processed in accordance with those regulations and all other applicable data protection laws and regulations, including, but not limited to, the Privacy and Electronic Communication Regulations.
What is personal data?
Personal data means any information relating to an individual who can be directly or indirectly identified by that data, such as:
- Email address
- Phone numbers
- Pregnancy experiences/case studies (including pregnancy loss) that you share with us
- Participation on our social media channels (Facebook, Instagram, Twitter etc.)
- Details of any opt-in and opt-out preferences you have communicated to us
- Whether or not you are a UK tax-payer (for the purposes of Gift Aid)
- Details of any ICP Support events you have participated in.
The above list is not comprehensive, but gives you an idea of what personal data we may gather about you.
Why and how do we use the information we collect about you?
We collect information about our supporters only if there is a clear reason for doing so as set out below.
Website and social media
By visiting our website or using any of our online services, you agree to your personal information being used and disclosed in the manner set out in this Policy.
When you visit www.icpsupport.org, as is the case with most websites, certain limited information (such as your browser type and IP address) will be collected by us automatically.
If you share a personal story or images with us via our website or social media channels (Facebook, Instagram, Twitter etc.) we may ask you if we can share this information with other families on our website or social media channels.
We may also invite you to consent to sharing your story and images more widely with the press. Newspaper or online articles about ICP are invaluable in helping us to raise awareness of the condition, and your personal stories enable us to share this message.
We would only ever share your personal ICP experience(s) and/or birth stories with your express consent using a permission form. See our Consent section for more information.
If you only read or download information from our website or visit our social media pages, we may gather information about this usage, such as which pages or posts are most popular and which events or activities generate the most interest. This information helps us to improve our service and the information we provide to you, and is aggregated and anonymised, meaning that it will not identify you as an individual.
Donations and purchases
If you use your credit or debit card to donate to us, buy something or pay online, we will ensure that we manage this transaction securely and in accordance with the Payment Card Industry Data Security Standard.
We do not store your credit or debit card details at all following the completion of your transaction. All card details and validation codes are securely destroyed once the payment or donation has been processed. Only those authorised to process payments will be able to see your card details. If we receive an email containing any credit or debit card details the email will be immediately deleted after processing the transaction.
Your information will be collected if you are a direct debit/standing order donor, and the details are restricted only to the team that process donations. Your details will be deleted, if and when you cancel your direct debit/standing order, within 12 months of your request to enable us to resolve any queries or disputes that may arise in relation to a direct debit claim.
Competitions and lottery
If you enter ICP Support’s monthly lottery (or enter any of our online competitions), either via our shop or by setting up a regular standing order, your information will be collected. Access to your details is restricted only to the team that process such transactions.
Your details will be deleted, if and when you cancel your direct debit/standing order, within 12 months of your request to enable us to resolve any queries or disputes that may arise in relation to a direct debit claim.
We will also use your information to provide lottery and competition services to you, such as contacting you when you win or for marketing purposes.
We may use your information for research purposes, for example by contacting you to see if you would be suitable for and interested in participating in our ongoing research studies. Information about you will be processed during any research studies you participate in.
When you agree to participate in our research studies we will explain how your data will be used and stored and will gain your express consent to store and process such data using a permission form. See our Consent section for more information.
Communications with you
Where you have indicated you would like to receive newsletters from us we may send marketing in the form of email alerts and bulletins to tell you about developments in the services available through our website, together with tips, news stories and competitions related to fundraising.
You can also unsubscribe from receiving certain electronic messages by following the ‘unsubscribe’ instructions included in our communication.
Identifying prospective donors is necessary to secure donations from trusts and individuals, so that we can grow our income and meet ICP Support’s charitable objectives.
We do this using prospect research. Our approach to prospect research complies with current law. We will update our approach should the legal position change.
Prospect research helps us to identify if a potential donor may have the capacity and propensity to give major donations to ICP Support and identify how best to approach them.
Prospect research includes manually gathering public and freely given information from the Internet, from ICP Support’s contacts and from our own donor records, and creating profiles to help us identify individuals, trusts, foundations and corporations able to give at this level, such as:
- Charity Commission data (which identifies trustees of grant-giving trusts, and charitable aims)
- Other sources of information about charitable trusts’ giving, for example trustfunding.org.uk, trust websites, charity trade press
- Companies House data (which identifies company directors)
- Company and charity websites which profile, for example owners, senior partners or Trustees
- News articles about business, financial or philanthropic decisions
- Public media where individuals have volunteered information about their interest or experience with pregnancy complications, for example interviews where individuals have spoken publicly about ICP Support
- Public social media accounts, e.g. a company’s Facebook or LinkedIn page, or an individual’s Twitter account which has a primarily professional function
- Create queries on our database to identify past donors who may have given substantial donations in the past, and therefore could do so again
- Review lists of individuals signing up to ICP Support fundraising events (and have opted in to communications) to look at the reasons that people give, their job titles, their family name (if they are well known/in the public eye) and postcodes. We use this information to target personalised invitations to engage further with ICP Support at those who are most likely to be interested
- Identify where our Trustees, volunteers or staff may be able to help with an introduction, for example because they move in the same professional social circles as a potential donor.
We do not seek express consent to our prospect research activities because we believe we have legitimate interest which is not overridden by the individual’s fundamental rights (see our Consent section).
For prospect research purposes we gather sensitive personal data only in the form of information about experience of ICP or pregnancy complications which the subject has willingly put in the public domain or shared with ICP Support.
We do not gather data from personal sources such as personal Facebook, Instagram or Twitter accounts. Nor do we conduct automated wealth-screening using external agencies.
We want all individuals who come into contact with ICP Support to have a positive experience, whether or not they are donors. We believe that the way we carry out prospect research will help us to identify potential donors efficiently, and to avoid making inappropriate or excessive approaches.
Your information may also be used for administration purposes – for example, to contact you about a donation you have made, an event you have expressed an interest in or registered for, to ask you to help us raise money or to participate in a survey to help us improve our services to you.
We also process your information for legal purposes – for example, where the processing is required or authorised by law (i.e. to collect Gift Aid), or to prevent fraud (i.e. money laundering).
When marketing we may also supplement or add to the information we hold about you with information that is available through, or received from, other sources (e.g. public registers or third-party information services). This allows us to send you the most relevant information and promote those fundraising opportunities that we believe you are most likely to be interested in.
Do you share my information with anyone else?
We work closely with a number of trusted partners with whom we need to share personal information to help us operate our service. These include:
- Banks and payment providers (i.e. PayPal) – to authorise and complete payment transactions
- Organisations within the payment card industry to help prevent online fraud
- Law enforcement bodies in order to comply with any legal obligation or court order
- HM Revenue & Customs, but only if we need to authorise claims for Gift Aid or other forms of tax efficient ways of giving
- The Gambling Commission, as we may be required to share information with them as a requirement of our lottery operating licence.
We may also provide information to third-party service providers who process information on our behalf to help run some of our internal business operations, including email distribution and IT services.
Many of our supporters who participate in events to raise funds for ICP Support set up a personal page on a specialist website (JustGiving or MyDonate) designed to help individuals and charities raise money and maximise the use of Gift Aid. Please visit JustGiving or MyDonate for details of their privacy policies and how they will process your information.
Personal data provided by our supporters for this purpose to JustGiving and MyDonate is passed to ICP Support. We store this information in our database and use it to communicate with our supporters about their fundraising activities.
We will only share information with other organisations where we believe it is necessary for a legitimate reason connected with the services we offer.
We carry out a balancing exercise to assess whether or not we need your express consent to conduct our activities. To do this, we consider both the content of the data that we collect and the way in which we wish to use that data.
In some cases our balancing exercise concludes that opt-in or express consent is required, for example sharing your story on our website or social media channels. Where consent is required we ensure that no stories are shared unless you have opted in or given express consent using a permission form.
In other cases we may decide that express or opt-in consent is not required. For example, we may wish to contact a donor who has donated to ICP Support in the past to ask them for further support, because people who have previously given are statistically more likely to support the same charity again, and this will help us to increase our funds raised.
We may contact such a supporter by post without seeking their express consent providing that the number of letters sent is proportionate to how recently the donor gave to ICP Support (for example a donor who gave to us five years ago would not expect to receive more than one letter a year).
However, the donor’s right to privacy and reasonable expectations will always override our interest in continuing contact with them by telephone or by email, and we would not therefore make any contact by these means without express or opt in consent.
Sometimes our balancing exercise may conclude that opt in consent is not required for us to process the data, because we have a legitimate interest in processing the data that is not overridden by the individual’s rights and interests.
For example, if we receive information about a new donor who wants to make monthly donations we will add the donor’s details to our database. We do this in order to claim the regular Gift Aid that the donor may wish to make.
We may process data about children under the age of 16, usually where such data is given to us by parents or guardians in the course of participating in fundraising events or sharing their stories on our social media channels.
We do not routinely collect dates of birth for supporters (e.g. our runners or our donors). Therefore, unless we are given cause to believe a supporter is under 16 we may maintain the same communications with them as with our adult supporters.
However, if we believe a supporter or donor may be under the age of 16 we take all reasonable care to establish whether their contact with us is made under the supervision of a teacher, parent or guardian. Younger children only participate in our events and fundraising activities in the presence of, or under the guidance of, a parent or guardian.
Sometimes people choose to donate to ICP Support in memory of a baby who has died. They may do this, for example by setting up an ‘In Memoriam’ page via JustGiving or MyDonate, or by writing to ICP Support directly enclosing a cheque for funds donated at a funeral.
We capture and process the information provided to us for this purpose to make sure we are sensitive and respectful in our communications with these supporters, for example empathising with their loss, thanking them for choosing to support ICP Support, and letting them know who they can contact in ICP Support for support and advice.
We recognise the importance of protecting our vulnerable supporters and follow the Code of Fundraising Practice in the UK issued by the Fundraising Regulator on treating donors fairly.
If an individual appears vulnerable we will offer them a cooling-off period or more time before taking a donation. If we believe the individual lacks the mental capacity to make a decision we do not take a donation.
Storing your information
We keep records for as long as required to operate our service in accordance with legal, tax and accounting requirements, and for no longer than is necessary for the purpose it was obtained for.
Where your information is no longer required, we will ensure that it is disposed of in a secure manner.
Analytics and social media plugins
We use analytics tools (such as Google Analytics) on our website to provide our services, identify service issues to us, and improve our services. These tools also help us to provide content tailored to users’ personal preferences and profiles.
These tools may be provided by third-party service providers and may include the collection and tracking of certain data and information regarding the characteristics and activities of visitors to our website. We may disclose data, including personal information, to certain such third-party services providers in order to obtain such services.
If you use buttons on our website linked to social media or similar sites (for example ‘Like’ or ‘Share’ buttons), content from our website may be sent back to that other website and, depending on your privacy settings, may be privately or publicly visible (for example to friends, followers or generally to anyone who has access to your profile page).
You may request further details on these other tools and third parties from us.
A cookie is a small file of letters and numbers that we may put on your computer or mobile device when you access our website. Cookies allow us to distinguish you from other users of the website, helping us to provide you with a good experience when you browse our website and also allowing us to improve our site. For example, they will tell us whether you have visited our site before or whether you are a new visitor.
Another example is enabling us to show you articles that you have recently read, so that you can access them again more easily.
Cookies can be set by the website you are visiting (first-party cookies) or by other websites (third-party cookies) whose content we are hosting, e.g. YouTube.
Most web browsers allow at least a degree of control over cookies through their settings. You can opt to receive an alert whenever a cookie is set or to disallow the setting of cookies altogether. You can also delete all existing cookies.
You can prevent the setting of cookies by adjusting the settings on your browser (see your browser Help for how to do this). Be aware that disabling cookies will affect the functionality of ICP Support’s website and many other websites that you visit. For information about how to manage or delete cookies for your particular browser, please refer to the browser’s Help section. Alternatively, you can visit www.aboutcookies.org, which has comprehensive information on how to manage cookies on a wide variety of desktop browsers.
We may update the terms of this policy at any time, so please do check it from time to time. We will notify you about significant changes in the way we treat personal information by sending a notice to the primary email address you have provided to us, or by placing a prominent notice on our website.
By continuing to use our website you will be deemed to have accepted such changes.We also commit to periodically reviewing our approach to consent and the balancing of legitimate interests with the rights and interests of the individual. If the balancing exercise indicates a different approach would be appropriate we change our approach accordingly.
We will review this policy if there is a change in the law that requires us to do so.
Our aim is for all information that we hold about you to be accurate and, where necessary, kept up to date. If you think any of the personal information we hold about you is inaccurate, you may request that it is corrected.
You also have the right to request copies of the personal information we hold about you and details of how we use that information. You also have a right, in certain circumstances, to require us to stop processing your personal information.
In relation to all of these rights, please email or write to us at the address below. Please note that we may, where permitted under applicable law, charge a small administrative fee and/or request proof of identity. We will respond to your requests within all applicable timeframes.
In certain circumstances (for example where required or permitted by law) we might not be able to provide you with access to some of your personal information, but where appropriate we will notify you of the reasons for this.
69 Mere Green Road