Macular Society is committed to protecting your personal information and being transparent about what information we hold. This policy is designed to give you a clear explanation about how we collect and use the personal information you provide to us and ensure that we are honest and clear about your privacy and personal information at all times.
Who we are
The Macular Society is the Data Controller and we are registered with the Information Commissioner's Office as a Data Controller under reference Z1377415 for all of our activities. In this policy, whenever you see the words ‘We’, ‘Us’ or Our’, it refers to The Macular Disease Society trading as Macular Society.
We are a registered charity No. 1001198 in England and Wales, SC042015 in Scotland, 1123 in the Isle of Man. We are also a company limited by guarantee, registered in England No. 2177039.
We are registered at Crown Chambers, South Street, Andover SP10 2BN.
We are registered with the Fundraising Regulator and follow their best practice code: Code of Fundraising Practice.
We are a member of the Association of Medical Research Charities, the Information Standard and the Helplines Partnership.
Your acceptance of this policy and our right to change it
By using our websites, social media pages, services (including phone, and email) or providing your information to us, we will collect and use your information in the way(s) set out in this policy. If you do not agree with this policy, please do not use our sites, social media pages or services.
We may make changes to this policy from time to time. If we do so, we will post the changes on this page and they will apply from the time we post them. This policy was last changed on 21/05/2019.
What is personal data?
Personal data is information that can be used to help identify an individual, such as name, address, phone number or email address. Some categories of data are more sensitive, which is known as personal sensitive data, including health information. Non-personal data is data that can’t identify you personally, but can provide us with information to improve our services.
Overview of this policy
It's important that you read our policy in full but to help guide you if you don't have time right now, here is a quick summary:
- We collect information that can be personal data, sensitive personal data or non-personal data.
- We collect information about the people we support, our supporters, funders, volunteers, the researchers who have expressed an interest in our funding and employees.
- We collect information to provide services or goods, to provide information, to administer our research participant database, to provide grants to researchers, to fundraise for our work, for administration, to manage membership, profiling and analysis to better understand our supporters and for the prevention or detection of crime.
- We only collect the information that we need or that helps us to provide the best possible service and fulfil our charitable aims and objectives.
- We do our utmost to keep personal information secure, including SSL technology (secure server software) on all of our websites and storing data on a secure database.
- We never share your data with another company or charity for their marketing or commercial purposes.
- We only share data where we are required by law or with carefully selected suppliers and trusted partners who do work for us, for example, a mailing house to send out our membership magazine. All our partners are required by their contract with us to treat your data as carefully as we do, to only use it as instructed and to allow us to check they do this.
- You can change your marketing preferences at any time by contacting our Supporter Care team – firstname.lastname@example.org or calling 01264 350 551
Our full policy
This policy applies to all the websites we operate, our use of emails and any other methods we use for collecting information. It covers what we collect and why, what we do with your information, what we won’t do with your information and what rights you have.
The information we collect
We collect information when you interact with us in order to build a world where we Beat Macular Disease.
We collect three kinds of information
- Non-personal information such as IP addresses (the location of the computer on the internet), pages accessed and files downloaded. This helps us to understand how many people use our websites, how many people visit on a regular basis and how popular/useful our web pages are. This information doesn’t tell us anything about who you are or where you live
- Personal information. We will ask you for information in order to provide you with the services requested, for example to send you information, your membership magazine or process a donation.
- Sensitive personal information or special category data. We may ask you for information about your health, for example, if you are living with macular disease and which type, so that we can provide you with relevant information and support or in order to support your safe participation in an event or training session. We may also collect this information if you make the information public or if you tell us about your experiences relating to a macular condition (for example, if you agree to share your story with us). We only collect this information with your consent.
We are committed to protecting the privacy of the young people that engage with us. If you are under 16 and would like to get involved, please ensure you have consent from a parent or guardian before you provide your personal information to us. We do not send any marketing communications direct to children under 16.
How we collect your information
We collect information about you in the following ways:
Information you give to us directly, for example when you:
- Become a member or professional member
- Sign up (yourself or others, including your children) to take part in or attend one of our fundraising, support or professional events
- Buy products in our shop
- Make a donation or tell us about your fundraising plans
- Tell us about a Gift in your Will
- Request advice or support from our services team, for example, receiving a call from a Befriender
- Contact our Advice & Information Team, when you may choose to provide details, including details of a personal nature, in particular about you or someone else's health
- Sign up to our Research Participant’s Database
- Sign up to our Education and Training App for Professionals
- Choose to share your story with us
- Take part in surveys, questionnaires or get involved with our campaigns
- Volunteer with us
- Apply to work with us
- Sign up to our e-newsletter
- When you visit our websites, we collect technical information such as the IP address you use to visit the website, your browser type and version and your browsing history
- Contact us or become involved with us in any other way not listed above.
Information from third parties
We may also receive information about you from third parties if you have given them permission to share this information and indicated that you wish to support the Macular Society. For example, if you set up a fundraising page for us with JustGiving or Facebook, or enter an independently organised event like the London Marathon; give an in- memory donation via a funeral director, or play our raffle or lottery.
Depending on your settings or the privacy policies for social media and messaging services, we may access information from those accounts or services.
If you have been named as the Executor on a Will, we may receive your details in order to administer a Gift left to us in that Will.
Publicly available sources
We may collect information about potential peer reviewers for our grant rounds from Web of Science, Research Gate, PubMed and Google Scholar. We also collect information about journalists who may be interested in our work. We use publicly available sources to ensure we understand our supporters effectively.
Your credit and debit card information
If you use your credit or debit card to donate to us, pay for a registration or make a purchase over the phone, we will ensure this is done securely and in accordance with the Payment Card Industry (PCI) Data Security Standard. We do not store your credit or debit card details at all following the completion of your transaction. All card details are securely destroyed once the payment or donation has been processed.
All purchases and donations completed online are handled securely by Committed Giving, PayPal or Eventbrite and we do not receive your card details.
How we use your data
We will mainly use the information we collect about you to:
- Provide you with the services, products or information you asked for, for example, Membership, information on macular disease or fundraising materials.
- Provide you with a service you have asked for such as matching your interests with those of a volunteer Befriender. Or enable the local Support Group to provide details of their meetings.
- Administer your donation or support your fundraising, including submitting your details to HMRC to claim Gift Aid if applicable.
- Administer your participation in an event, which may include sharing your details with a third party event organiser.
- Keep you up-to-date with the impact of your support and our work (including volunteering and events) and to ask for financial and non- financial support. This will only be where you have consented to being contacted for these purposes unless the Macular Society is in a position to rely on the Legitimate Interest basis for contacting you via postal communications only.
- Manage our research grants, including funding availability notifications and the peer review process.
- Match your eligibility to participate in a research trial if you are registered with the Research Participant’s Database.
- Support and further our mission, for example if you have shared your story or given us consent to use your photo, we may use this in marketing or promotional materials.
- Process orders from our online shop.
- Carry out any obligations arising from any contracts entered into by you and us.
- Process a job or volunteering application.
Keeping a record of your relationship with us
We record contact we have with you, so we have a clear understanding of our relationship, how you've supported us or have been supported by us in the past. We may also collect and retain your information if you send us feedback about our services, give us a compliment or make a complaint.
Understanding how we can improve our services, events, products or information
We believe it's important to make sure that all of our services are the very best they can be, which is why we evaluate them. Once you've used one of our services, taken part in an event, received information or bought a product, we may get in touch to ask you about your experience. You don't have to take part but it's really valuable to help us improve in the future.
Understanding our supporters and working more effectiively
We are committed to providing everyone who gets in touch with us with the very best experience, providing you with timely and relevant communications and using our resources effectively.
To do this, we may use profiling techniques to provide us with general information about you, which may include geographic, demographic or other information relating to you, to better understand your interests and preferences. This information is compiled, either by our employees or occasionally a third party insights company, using publicly available data or information that you have already provided to us.
Publicly available information may include information found in places such as Companies House, the Charity Commission, LinkedIn, listed Directorships, typical earnings in a given area or published in the media.
By doing this it allows us to understand the background of the people who support us and helps us to make the right requests. Importantly, it helps us to raise more funds, sooner, and more cost-effectively, than we otherwise would.
Legal basis for processing
The law requires us to set out the lawful grounds on which we collect and process your personal information as described in this policy. Depending on the purposes for which we use your data, one or more of the grounds listed below may be relevant.
In certain instances, we collect and use your personal information by relying on the legitimate interest legal basis. In broad terms, our 'legitimate interests' means our interest in being able to run the Macular Society as a charitable entity effectively in pursuit of our aims and ideals. This includes:
- Sending our regular supporter newsletter, Macular Matters, by post to keep supporters informed of our work and progress towards our goals
- Sending direct marketing materials to supporters by post for fundraising purposes
- Conducting analysis to better understand who our supporters are and better target our fundraising activity
- Conducting research to better understand who is using our Advice and Information Services and their impact to improve our service offering
- Measure and understand how our audiences respond to a variety of marketing and communications activities so we can ensure our messages and services are well targeted, relevant and effective
- Providing information about macular disease
- Processing donations
- Administering events
- Staff recruitment and taking applications for volunteers and contacting volunteers about their role
However 'legitimate interests' can also include your interests, such as when you have requested information or certain goods/services from us, and those of third parties. If we rely on the 'legitimate interests' basis to use your personal information, we will only use the information in accordance with the purposes described in this policy.
When we legitimately process your personal information in this way, we also consider and balance any potential impact on you (both positive and negative), and your rights under data protection laws. We will not use your personal information for activities where our interests are overridden by the impact on you, for example where collection and use of your information would be excessively intrusive (unless, for instance, we are otherwise required or permitted to by law).
In many instances, we will rely on obtaining your consent to our use of your personal information in a certain way (for example, Membership, sending your details to your local support group leader, or registering for our Research Participant’s Database), asking for your consent to use your personal information to send you marketing information by email and to share sensitive personal information with us.
We may need to collect, process and disclose personal information to comply with a legal obligation. For example, where we are ordered by a court or regulatory authority or we are legally required to hold donor transaction details for Gift Aid or accounting/tax purposes. We may also use personal information to cross check and prevent known malicious activities on the Macular Society website.
Performance of a contract
For example, if you purchase something from our online shop, receive a research grant from us or agree to work for us, we need to be able to process your information for the purpose of meeting our contractual obligations.
Communicating with you
Communicating with you
If you have provided us with your postal address we may send you direct mail, including our Macular Matters newsletter, which will include updates on our work - the research we're funding, and the information and support services we offer. We may also contact you about fundraising, campaigning, 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 have the option to opt-out of receiving marketing communications by post or phone at any time by contacting our Supporter Care team by writing to us at our Head Office address, emailing email@example.com or calling us on 01264 350 551.
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 unsubscribe link in our marketing emails. 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.
If you have indicated you do not wish to be contacted by us for marketing purposes, we will retain your details on a 'do not contact' list to help ensure that we do not contact you accidentally. However, we may still need to contact you if you carry on dealing with us, including (but not limited to):
- Fulfilling your membership such as sending out the magazine and sending renewal reminders
- Processing a donation you make or any continuing Direct Debit
- Providing you with information you need in order to participate in an activity, event or campaign for which you have registered
- Sending you information you've requested or shop orders placed
- Providing your updated details to your local Support Group Leader if you’ve asked to keep hearing from them directly
- Explaining and apologising where we have made a mistake
- Dealing with future legal claims in connection with a contract we have with you.
Storing your data
When you give us your details, you agree to us recording your details on our secure database, so we can provide you with the best possible service every time you contact us. We hold your personal information for as long as required to provide you with the information or services you have requested, to administer your relationship with us, to inform our research into macular conditions, to inform our supporters’ preferences, to comply with the law or to ensure we do not communicate with people who no longer wish to hear from us.
We have adopted a data retention policy that sets out the different periods we retain personal information for in respect of these relevant purposes. The criteria we use for determining these retention periods is based on various legal requirements; the purpose for which we hold data and whether there is a legitimate reason for continuing to store it (such as in order to deal with any future legal disputes); and guidance issued by relevant regulatory authorities including, but not limited to, the Information Commissioner's Office (ICO).
Personal information that we no longer need is securely disposed of and/or anonymised so you can no longer be identified from it. Some personal information may be retained by us in archives for statistical or historical research purposes although we will do this in a manner that complies with applicable data protection law.
We continually review what personal information and records that we hold, and delete what is no longer required. We never store payment card data after the transaction has been completed.
The Macular Society holds its data on a secure database which is hosted in the EU. Access to this system is limited and there is restricted access to data based on a person's role in the organisation.
The Macular Society’s digital files are stored on a terminal server hosted by Bluecube Technology Solutions at a data centre in the UK. Access to this data centre is restricted.
Our third party suppliers store data in the EU, with the following exceptions:
- Our online events registration platform, Eventbrite, who store data in the USA. If you create an account with them, you can manage your personal data online
- Our survey tool, SurveyMonkey, who store data in the USA.
Where we engage with organisations outside of the EU, we will endeavour to ensure that the processing of your data is subject to appropriate security measures. All of our current suppliers adhere to the EU-US Privacy Shield – you can find out more: https:// www.privacyshield.gov/welcome
Paper records are stored on premises at our offices, in our secure offsite facility, or with our network for Regional Managers. These are securely locked when no members of staff are present and access is restricted and monitored.
In line with the principles defined in the Data Protection Act 2018 and the General Data Protection Regulation (GDPR), the Macular Society will ensure that personal data will be processed in ways that are:
- Lawful, fair and transparent
- Collected for specific explicit and legitimate purposes
- Adequate, relevant and limited
- Accurate and up-to-date
- Not kept for longer than necessary
Your details will be kept securely and only shared with trusted suppliers, who have a contract with us, who enable us to deliver our charitable objectives, for example, distribution of our newsletter or if required to by law, i.e. with the police or a regulatory body. At all times we remain legally responsible for your data. We never share your data with any third parties for their own marketing or commercial purposes, including charities.
We participate in Facebook’s Custom Audience and Lookalike Audience programs so that you can receive relevant ads from us when you use Facebook, and so that we can raise awareness among users of Facebook who share similar interests to you. We provide personal information such as your email address to Facebook to enable them to determine if you are a registered account holder with Facebook. Our adverts may then appear when you access Facebook and on your Facebook feed. Your data is sent in an encrypted format that is deleted by Facebook if it does not match with a Facebook account. For more information please read the Facebook Business page about Custom Audiences and Facebook's Data Policy.
Cookies, web beacons and similar technologies
You may be able to opt-out of third party advertising technologies (including cookies) which remember your browsing habits and try and display relevant advertising when you use our websites, app(s) or services by visiting www.youronlinechoices.com/uk/your-ad-choices. If you choose to turn off these technologies, we may still serve you ads but these ads are unlikely to be tailored to your interests.
We don't store personally identifiable information, but we do use the information we gather to help improve the experience of our website. For example, they help us to identify and resolve errors, or to determine the most relevant information and services to show our visitors in the future.
Under UK data protection law, you have rights over personal information that we hold about you. These are summarised below.
Right to be informed
You have the right to be told how your personal information will be used. This policy and other policies and statements used on this website and in our communications are intended to provide you with a clear and transparent description of how your personal information may be used.
Right to access your personal information
You have a right to access certain personal data being kept about you, either physically or digitally. Anyone who wishes to exercise this right should apply, in writing, to the Data Lead at Macular Society, Crown Chambers, South Street, Andover SP10 2BN or firstname.lastname@example.org . Please include details of the information you wish to access. The charity will respond within 30 days, providing that the request includes appropriate contact details, proof of identity from the individual and we can validate the request.
Right to have your inaccurate personal information corrected
You have the right to have inaccurate or incomplete information we hold about you corrected. If you believe the information we hold about you is inaccurate or incomplete, please provide us with details and we will investigate and, where applicable, correct any inaccuracies.
Right to restrict use of your personal information
You have a right to ask us to restrict the processing of some or all of your personal information in the following situations: if some information we hold on you isn't right; we're not lawfully allowed to use it; you need us to retain your information in order for you to establish, exercise or defend a legal claim; or you believe your privacy rights outweigh our legitimate interests to use your information for a particular purpose and you have objected to us doing so.
Right to erasure of your personal information
You may ask us to delete some or all of your personal information and in certain cases, and subject to certain exceptions (i.e. if we have to hold on to it to meet a legal obligation), you have the right for this to be done.
Right for your personal information to be portable
If we are processing your personal information (1) based on your consent, or in order to enter into or carry out a contract with you, and (2) the processing is being done by automated means, you may ask us to provide it to you or another service provider in a machine-readable format.
Right to object to the use of your personal information
If we are processing your personal information based on our legitimate interests or for scientific/ historical research or statistics, you have a right to object to our use of your information. If we are processing your personal information for direct marketing purposes, and you wish to object, we will stop processing your information for these purposes as soon as reasonably possible.
If you want to exercise any of the above rights, please contact our Supporter Care team at Macular Society, Crown Chambers, South Street, Andover SP10 2BN or by email: email@example.com or by phone 01264 350 551. We may be required to ask for further information and/or evidence of identity. We will endeavour to respond fully to all requests within 30 days of receipt of your request, however if we are unable to do so we will contact you with reasons for the delay.
Please note that exceptions apply to a number of these rights, and not all rights will be applicable in all circumstances. For more details we recommend you consult the guidance published by the Information Commissioner's Office in their 'Your Data Matters ' guidance for individuals.
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 the National Bereavement Register. However, we really appreciate it if you let us know if your contact details or circumstances change. Just contact our Supporter Care team at firstname.lastname@example.org or call us on 01264 350 551 and we will update our records.
How to change the way we contact you
Your personal preferences and keeping your data accurate is of utmost importance to us.
If at any stage you do not want to hear from us, want to change your contact preferences or want to update your details, you can email email@example.com , call us on 01264 350 551 or write to our Supporter Care Team at Macular Society, Crown Chambers, South Street, Andover SP10 2BN.
Any marketing email we send you will contain information about how to unsubscribe from email marketing communications. During any phonecall, or email you have with us, please feel free to let us know how you prefer to be contacted.
What to do if you have any concerns
If you are unhappy at any time about the way we process and/or use your personal information, please contact the charity's Data lead who will investigate your concerns. Please write to them at Macular Society, Crown Chambers, South Street, Andover SP10 2BN email firstname.lastname@example.org or call 01264 350 551.
We appreciate the opportunity your feedback gives us to learn and improve. Find out more in our Complaints Policy . If you are unhappy with the way your (or your child's) data are being processed, and we have been unable to satisfactorily resolve your concern, you have the right to complain to the Information Commissioner's Office (ICO): www.ico.org.uk
Approved by: Company Secretary (Cathy Yelf) Date: 3 October 2019