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Privacy

Privacy Notice

 

Covid-19 (Coronavirus) and your information - Updated on 21st April 2020

Supplementary privacy note on Covid-19 for Patients/Service Users of ellenor

This notice describes how we may use your information to protect you and others during the Covid-19 outbreak. It supplements our main Privacy Notice.

The health and social care system is facing significant pressures due to the Covid-19 outbreak. Health and care information is essential to deliver care to individuals, to support health and social care services and to protect public health. Information will also be vital in researching, monitoring, tracking and managing the outbreak. In the current emergency it has become even more important to share health and care information across relevant organisations.

Existing law which allows confidential patient information to be used and shared appropriately and lawfully in a public health emergency is being used during this outbreak. Using this law the Secretary of State has required NHS Digital; NHS England and Improvement; Arms Length Bodies (such as Public Health England); local authorities; health organisations and GPs to share confidential patient information to respond to the Covid-19 outbreak. Any information used or shared during the Covid-19 outbreak will be limited to the period of the outbreak unless there is another legal basis to use the data. Further information is available on gov.uk and also some FAQs on this law.

During this period of emergency, opt-outs will not generally apply to the data used to support the Covid-19 outbreak, due to the public interest in sharing information. This includes National Data Opt-outs. However, in relation to the Summary Care Record, existing choices will be respected. Where data is used and shared under these laws your right to have personal data erased will also not apply.  It may also take us longer to respond to Subject Access requests, and new opt-out requests whilst we focus our efforts on responding to the outbreak.

In order to look after your health and care needs, we may share your confidential patient information including health and care records with clinical and non clinical staff in other health and care providers, for example neighbouring GP practices, hospitals and NHS 111. We may also use the details we have to send public health messages to you, either by phone, text or email.

During this period of emergency, we may offer you a consultation via telephone or video conferencing. By accepting the invitation and entering the consultation you are consenting to this. Your personal/confidential patient information will be safeguarded in the same way it would with any other consultation.

We will also be required to share personal/confidential patient information with health and care organisations and other bodies engaged in disease surveillance for the purposes of protecting public health, providing healthcare services to the public and monitoring and managing the outbreak. Further information about how health and care data is being used and shared by other NHS and social care organisations in a variety of ways to support the Covid-19 response is available on the NHS website. 

In such circumstances where you tell us you’re experiencing Covid-19 symptoms we may need to collect specific health data about you. Where we need to do so, we will not collect more information than we require, and we will ensure that any information collected is treated with the appropriate safeguards. 

We may amend this privacy notice at any time so please review it frequently. The date at the top of this page will be amended each time this notice is updated. 

 

PRIVACY STATEMENT UPDATED 9 December 2020

Introduction:

ellenor Our code of conduct is to respect any personal information you share with us and keep it safe.  We aim to be clear when we collect your details, and this privacy notice explains both how we collect and use your information.

There are different reasons why we might need your personal details – the main ones are to provide you support and care, process your donations to us or register you for an event or for recruitment purposes. 

It’s so important that we can communicate with you, ellenor is a charity who have relationships with fundraisers, supporters, volunteers, researchers, so we use your personal information on a day to day basis to  keep you up to date about the work we’re doing and our vision of supporting more local families facing life limiting illness  – we don’t ever want to be in a position where we are unable to provide our care to families who most need it.

Everyone working for ellenor has a legal duty to keep information about you confidential.

Where services are undertaken by non ellenor staff, agreements are in place to ensure confidentiality.

HOW DO WE COLLECT INFORMATION ABOUT YOU?

We collect information in the following ways:

  • When you give it to us DIRECTLY?

You may give us your details in order to sign up for one of our events, tell us your story, make a donation, apply for a vacancy or to become volunteer, or communicate with us.  You also need to provide your information to us to as a patient, carer and family members?

When you use our WEBSITE

Like most websites, we use “cookies” to help us make our site – and the way you use it – better. Cookies mean that a website will remember you. They’re small text files that sites transfer to your computer (or phone or tablet). They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields. There are more details in our Cookie Policy.

  • When you give it to us INDIRECTLY?

Your information may be shared with us by third parties, for example independent event organisers, for example the London Marathon fundraising sites like Just Giving or Virgin Money Giving and Much loved. These independent third parties will only do so when you have indicated that you wish to support ellenor and with your consent.

We may also receive data about you from subcontractors acting on our behalf who provide us with technical, payment or delivery services, advertising networks and search/analytics providers used on our website. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

We also use information from the following sources:

Social Media

Communication, engagement and actions taken through external social media platforms that we participate on are subject to the terms and conditions as well as the privacy policies held with each social media platform respectively.

Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp or Twitter, you might give us permission to access information from those services, for example when you publicly tag us in an event photo. When you communicate engage or take any action on a social media platform please do ensure that you refer to the terms and conditions of those platforms as well as their privacy policies.

You are advised to use social media platforms wisely and communicate / engage upon them accordingly in regard to your own privacy and personal details preferences. 

Information available publicly

We supplement information on our supporters with details from publicly available sources such as charity websites and annual reviews, corporate websites, public social media accounts, the electoral register and Companies House in order to create a fuller understanding of someone’s interests and support of ellenor. Wherever it is practical for us to do so, we will make clear why we are collecting this type of information and what it will be used for.

WHAT INFORMATION DO WE COLLECT?

We only collect details about our supporters and care to the extent that there is a clear reason for us to do so, for example asking for health information if you are taking part in a sporting event, or where we ask for information for the purpose of providing appropriate facilities or support.   We will also collect this type of information if you make it public or volunteer it to us –

Certain types of personal information are in a special category under data protection laws, as they are considered to be more sensitive.  Examples of this type of sensitive data (known as 'special category data') would be information about health, race, religious beliefs, political views, trade union membership, sex life or sexuality or genetic/biometric information.  

We collect store and use the following kinds of personal information: -

  • Your name
  • Your contact details
  • Your date of birth
  • Your bank or credit card details. Where you provide these to make a payment

Where it is appropriate, we may also ask for:

  • Information relating to your health (for example if you are taking part in a high-risk event) e.g., sky dive
  • Why you have decided to donate to us – this question isn’t mandatory, and we only want you to answer if you are comfortable telling us.
  • Information about your activities on our website and about the device you use to access these for instance your IP address and geographical location.
  • Where you have left us a legacy any information regarding next of kin with which you may have provided us to administer this
  • Any other personal information you provide to us.

HOW DO WE USE YOUR PERSONAL INFORMATION?

  • Provide you with information on services, products or information that you asked for.
  • To process and acknowledge donations or payments we have received from you.
  • Send you information on our latest news and events, fundraising campaigns, the ellenor lottery and raffles and our vital work.
  • To further our charitable aims, including fundraising activities.
  • To record your gifts of money or the sale of goods you donated to our shops and, if appropriate, to reclaim tax paid on these through the Gift Aid scheme.
  • To enable your use of the services available on our website.
  • To send you e mail notifications you have specifically requested.
  • To send you our e mail newsletter, if you have requested it (you can unsubscribe to receiving our e mail newsletter at any time).
  • To register administer and personalise online tribute pages on our website.
  • Respond to or fulfil any requests, complaints or queries you make to us.
  • Understand how we can improve our services, products or information by conducting analysis and market research.
  • To register and administer your participation in events for which you have registered.
  • Check for updated contact details against third party sources so that we can stay in touch.
  • Process applications for funding and for administration of our role in the projects we fund.
  • Administer our websites and to troubleshoot, perform data analysis, research, generate statistics and surveys related to our technical system.
  • To provide third parties with statistical information about our website users (but those third parties will not be able to identify any individual user from that information).
  • Contact you if you enter your details onto one of our online forms and you don’t ‘send’ or ‘submit’ the form, to see if we can help with any problems you may be experiencing with the forms or our website.
  • Safeguard our staff and volunteers.
  • Conduct due diligence.
  • Process your application for a job or volunteering position.
  • Conduct training and quality control.
  • Establish, defend or enforce legal claims.
  • Meet our legal obligations, for instance to perform contracts between you and us or our obligations to regulators, government and/or law enforcement bodies.
  • Process your donation or support your fundraising, including processing gift aid claims.

If you would prefer not to hear from us, you can contact us via our website form or by calling our Supporter Care Team on 01322 626 509

 HOW WE USE YOUR INFORMATION TO TELL YOU ABOUT OUR WORK

Sending Marketing Communications

Our marketing communications include information about our latest news and events, fundraising campaigns, our ellenor lottery and raffles and our vital work with patients and their families and carers. If you do not want to receive these communications, contact our Supporter Care Team on 01322 626 509 or email preferences@ellenor.org

We may use information we hold about you, for example the record of your previous donations to and/or relationship with us, your location and demographics, as well as the type of activity you have been involved with, to tailor our communications with you about future activities

Thanking and letting you know how we spend your donation

we think it's important to let our supporters know how their money is being spent, even if they haven't opted into marketing.  We may send information to individuals who have supported us to say thank you and provide an update on our work

Sharing your story

Some people choose to tell us about their experiences with ellenor. This may include them sharing sensitive information related to their health and family life, in addition to their biographical and contact information. 

Only 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 our events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report and impact report. 

LEGAL BASIS FOR PROCESSING   

Supporters

The lawful basis for processing data held on supporters is the legitimate purpose of raising charitable funds to support the delivery of ellenor clinical care services. 

Data protection laws mean that each use we make of personal information must have a “legal basis”.  The relevant legal bases are set out in the General Data Protection Regulation (EU Regulation 2016/679) and in current UK data protection legislation.

Specific consent

Consent is where we ask you if we can use your information in a certain way, and you agree to this (for example when we send you marketing material via text or e-mail).  Where we use your information for a purpose based on consent, you have the right to withdraw consent for any future use of your information for this purpose at any time. 

Legal obligation

We have a basis to use your personal information where we need to do so to comply with one of our legal or regulatory obligations.  For example, in some cases we may need to share your information with our various regulators such as the Charity Commission, Fundraising Regulator, Information Commissioner or Gambling Commission

Legitimate Interest

We may process your personal information for carefully considered and specific purposes which are in our interest and enable us to enhance the services we provide, but which we believe also benefit you our very kind supporters.

Please see below for some of these interests and when we may process your information in this way:

  • Where the processing enables us to enhance, modify, personalise, or otherwise improve our services/communications for the benefit of our supporters.
  • To enhance the security of our network and information systems
  • To better understand how people, interact with our websites
  • To provide postal communications which we think will be of interest to you
  • To determine the effectiveness of promotional campaigns and advertising
  • To inform our supporters as to how your monies raised are spent on providing a health and care service at ellenor

Whenever we process data for these purposes, we will ensure that we always keep your personal data rights in very high regard. You have the right to object to this processing if you wish, and if you do wish to do so get in touch either through e mail preferenes@ellenor.org  or contact our Supporter Care Team on 01322 626 509

If you would prefer not to hear from us, you can contact us via our website form or by calling our Supporter Care Team on 01322 626 509

KEEP IN TOUCH WITH US incorporated into all mailings

We provide support and comfort to people suffering with a terminal or life limiting illness, enabling them to do the things they love with the time they have left. That’s why we would love to keep in touch and keep you informed of our latest news, future fundraising activities, appeals, lotteries and other ways in which you can support us.

Please tell us how we can keep in touch with you by ticking the options below in filling in your details:

[ ] by email: ___________      [ ] by SMS: __________

We will continue to contact you by post or phone about how your support has made an impact for local families. However, if you would prefer not to hear from us please tick the box below:

[ ] I do not wish to hear about ellenor by post or phone

Our promise to you  

We will keep your details safe and will only allow your information to be used by suppliers working on our behalf. We will not sell or give your contact details to any other organisation to use for their own purposes unless requested to by law. To view our complete privacy policy, please visit our website at www.ellenor.org/privacy

Patients and their families or carers

We ask you for information about yourself so that you can receive proper care treatment and support. We keep this information, together with details of your care, because it may be needed if we see you again.

We may use some of this information for other specified reasons:

  • Providing you or a member of your family health care or treatment
  • Looking after and safeguarding your health and wellbeing or that of the general public
  • Managing and planning care services
  • Preparing statistics on performance and activity
  • Investigating complaints or legal claims
  • Helping staff to review the care they provide to make
  • Training and education staff (but you can choose whether or not to be involved personally)
  • Research approved by the Local research Ethics Committee. (If anything, to do with the research would involve you personally, you will be contacted to see if you are willing to take part.   You will not be identified in any published results without your agreement)
  • Legal Requirement, sometimes the law required us to pass on information such as to notify a death.
  • In the event of a transfer to another health care provider, your medical records will be shared, in order to facilitate your continuing care. You may be receiving care from other health professionals as well. So that we can all work together for your benefit we may need to share some information about you. Whenever we can remove details that identify you. The sharing of some types of very sensitive personal information is strictly controlled by law. Other professionals who receive information from us are also under a legal duty to keep it confidential.

In addition to the information recorded when we first meet you, people attending to your care will request or record information about you which will form an integral part of your patient notes and may be used as detailed above.

You have the right of access to your health records in accordance with the Data Protection Act 2018. You may request a copy of your records at any time. If you become aware of any incorrect information that we are holding about you, then you have the right to request that this information be changed or erased.

If at any time you have any questions about how we use your information, you can speak to the person in charge of your care or alternatively write to:

Director of Care, ellenor, Coldharbour Road, Gravesend Kent DA11 7HQ

HOW WE KEEP YOUR INFORMATION SAFE

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 have passed the Government backed industry scheme securing Cyber Essentials Accreditation which is an annual assessment.  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 and volunteers.

We use external companies to collect our lottery and retail gift aid data and to process personal data for our marketing and fundraising communications. Our Human Resources department use external companies in relation to payroll and pension administration and DBS background checks. 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.

Everyone working for ellenor has a legal duty to keep information about you confidential.

Where services are undertaken by non ellenor staff, agreements are in place to ensure confidentiality.

Recruitment

If you apply for a vacancy or volunteering opportunity, we will ask for information about yourself to process your application and for preparing statistics.

 HOW LONG WE KEEP YOUR INFORMATION FOR:

We keep your personal data active on our fundraising database for a period of five years. When you receive a communication from us you can easily opt out and we will stop contacting you.  You can request to opt out of communications at any time simply by contacting our Supporter Care Team on 01322 626 509 or e mail preferenes@ellenor.org

After a period of five years if we don’t have your consent to continue contacting you, we will securely archive your record on our database.  

We take into account various criteria when determining the appropriate retention period for personal data including: 

  • the purposes for which we process your personal data and how long we need to keep the data to achieve these purposes.
  • how long personal data is likely to remain accurate and up to date.
  • for how long the personal data might be relevant to possible future legal claims.
  • any applicable legal, accounting, reporting or regulatory requirements which specific how long certain records must be kept.

SHARING YOUR INFORMATION WITH OTHER ORGANISATIONS

Supporters

  • We work with carefully selected partners who carry out work on our behalf. These partners include mailing houses, marketing agencies, IT specialists and research firms. The kind of work we may ask them to do includes processing, packaging, mailing and delivering purchases, answering questions about products or services, sending postal mail, emails and text messages, carrying out research or analysis and processing card payments. We only choose partners who work within the Data Protection guidelines. We will only pass personal data to them if they have signed a contract with us.
  • We use profiling to identify individuals who may also be able to give at the level of our current high-level supporters and who may be willing to develop mutually beneficial relationships.
  • Abide by the requirements of current data protection legislation
  • Treat your information carefully as we would only use the information for the purposes it was supplied (and not for their own purposes or the purposes of any other organisation)
  • Allow us to carry out checks to ensure they are doing all these things.

If at any time you have any questions about how we use your personal information for marketing purposes, you can contact Our Supporter Care Team on 013222 626 509 or e mail preferences@ellenor.org

Patients and their families

In the event of a transfer to another health care provider, your medical records will be shared, to facilitate your continuing care. You may be receiving care from other health professionals as well. So that we can all work together for your benefit we may need to share some information about you. Whenever we can remove details that identify you. The sharing of some types of very sensitive personal information is strictly controlled by law. Other professionals who receive information from us are also under a legal duty to keep it confidential.

In addition to the information recorded when we first meet you, people attending to your care will request or record information about you which will form an integral part of your patient notes and may be used as detailed above.

You have the right of access to your health records in accordance with the Data Protection Act 1998. You may request a copy of your records at any time. If you become aware of any incorrect information that we are holding about you, then you have the right to request that this information be changed or erased.

If at any time you have any questions about how we use your information, you can speak to the person in charge of your care or alternatively write to:
Director of Care, ellenor, Coldharbour Road, Gravesend Kent DA11 7HQ

KEEPING YOUR INFORMATION UP TO DATE.

We may use information from external sources such as the post office national change of address database and/or the public electoral roll or GP for patients to identify when we think you have changed address so that we can update our records and stay in touch. We only use sources where we are confident that you’ve been informed of how your information may be shared and used. 

We do this so we can continue to contact you where you have chosen to receive marketing messages from us and contact you if we need to make you aware of changes to our terms or assist you with problems with donations.

This activity also prevents us from having duplicate records and out of date preferences, so that we don’t contact you when you’ve asked us not to.

We’re committed to putting you in control of your data and you’re free at any time to opt out from this activity.  

YOUR RIGHTS

Asking us to stop using your data or finding out more

You have a right to ask us to stop holding 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.  Simply contact our Supporter Care Team on 01322626509 or email preferences@ellenor.org.

You have a right to ask for a copy of the information we hold about you in accordance with the Data Protection Act 2018.

Requests to access your information should be made in writing and sent to the Information Governance Lead, Tracey Hill and the appropriate forms will be sent for completion.  We can assist you with this if needed. 

You will be asked to verify your identity– and once confirmed your information will be supplied at no charge.

Under UK data protection law, you have rights over personal information that we hold about you.  We’ve summarised these below:

Right to access your personal information

You have a right to request access to the personal data that we hold about you. You also have the right to request a copy of the information we hold about you, and we will provide you with this unless legal exceptions apply. 

If you want to access your information, send a description of the information you want to see by post to ellenor (and put in our address) and or call

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, you have the right for this to be done. If we are unable to delete your information, we will explain why this is the case. 

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 us on preferenes@ellenor.org We may be required to ask for further information and/or evidence of identity. We will endeavour to respond fully to all requests within one month of receipt of your request, however if we are unable to do so we will contact you with reasons for the delay.

For more details we recommend you consult the guidance published by the UK’s Information Commissioner’s Office  

CHANGES TO THIS POLICY  

Changes to our policy

We may change this Privacy Policy from time to time.  If we make any significant changes in the way, we treat your personal information we update our website www.ellenor.org –and inform you through our fundraising and marketing communications. We have to identify where the updates will be stored so it will be adjusted on the website accordingly.

COMPLAINTS  

Complaints Policy

If you are not happy with any aspects of how we collect, and store private data please tell us - we may be able to provide further explanation of our actions or improve if our performance is less than it should be. We take all complaints seriously, and to deal with them in a timely manner.

To speak to us about your complaint please contact us on: 
01474 320007 or email info@ellenor.org

There are also other routes you can take if you feel we have not adequately resolved your complaint. These include:

The Charity Commission
The Charity Commission, P.O. Box 1227, Liverpool, L69 3UG
www.charity-commission.gov.uk / Tel. no. 0845 600 8000

Fundraising Regulator
2nd floor, CAN Mezzanine Building, 49-51 East Road, London, N1 6AH
enquiries@fundraisingregulator.org.uk / 0300 999 3407

Care Quality Commission

CQC National Customer Service Centre, Citygate, Gallowgate, Newcastle upon Tyne, NE1 4PA

www.cqc.org.uk/contact-us / 03000 616161

Information Commissioner’s Office

Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow
Cheshire, SK9 5AF

0303 123 1113 (local rate) or 01625 545 745 (national rate)

www.ico.org.uk/global/contact-us

ellenor is a charity registered in England and Wales (1121561), and a company limited by guarantee (6302132). Registered office at Coldharbour Road, Gravesend, Kent. DA11 7HQ