Welcome to the Kidney Cancer Support Network (KCSN) website. Our website is an information, education, and awareness-building website for the patient-led charity, Kidney Cancer Support Network (charity no. 1164238).
We will keep you informed of any changes that we make to our website policies, and you should check this page to ensure that you are happy with any changes made.
By entering this website, you agree to be bound by the policies and terms and conditions shown below:
1. Privacy and data protection policy
How do we collect information?
We obtain personal information about you when you register for our newsletter or patient registry, send an electronic enquiry, make a donation to us, use our telephone helpline or forum, enquire about our activities, complete feedback forms or surveys, or otherwise provide us with personal information. We may also receive information from third parties, such as family or friends.
Consent for the collection and use of personal information
What information do we collect about you?
Personal information we may hold could include:
· Name and date of birth
· Contact information, such as email address, postal address and telephone number
· Health information about your cancer experience or the experience of a relative or friend
· Information you may choose to provide regarding your personal situation in order to receive support or information.
We also gather information about the use of our website, such as pages most visited and activities of most interest to users. We may use this information to make improvements to our website and to ensure we provide a user-friendly service. This information is anonymous and does not identify individual users of our website.
What we do with the information we gather?
We will use this information:
· To help us understand your needs
· To provide you with the services, materials or information you have requested
· To help us provide you with a better service
We will not sell, distribute, gift or lease your personal information to third parties, unless we have your express permission to do so.
We may, with your permission, use your information to provide copies of our newsletter, update you with information regarding changes to our website, and inform you of events that may be of interest to you.
We may contact you by email, or mail. If you do not want us to contact you, please email us clearly marking the subject box ‘unsubscribe’.
We will hold your information for as long as is required to continue to provide you with our services, or until you ask us to delete it, withdraw your consent for us to hold your information, or ‘unsubscribe’.
If you register to use our patient registry, you will be providing personal information through the registration process and completion of your personal health profile.
Only KCSN will have access to your personal information and health profile. Your personal health profile will be anonymised and identified via a personal identification number. All data held in the patient registry will be encrypted and stored on a secure platform.
Information stored in the patient registry will be used in research studies to assess how cancer patients are treated and cared for in the UK. This information will eventually be used to help improve cancer services and access to treatments, which will ultimately lead to an improvement in the quality of life of kidney cancer patients.
If you call our helpline, you may choose to provide details of a personal or medical nature. Only the helpline operators, who are cancer patients themselves, have access to your personal medical information and only for the purposes of dealing with your enquiry. If you choose to provide personal information, details will be encrypted and stored on a secure database. We will not pass on your details to anyone else without your express permission.
Our knowledge forum is moderated for any commercially sensitive, inappropriate, or defamatory comments, which, if found, will be dealt with in an appropriate manner. The posting of personal information on the knowledge forum means your information is publicly accessible to other forum members, whether they are members of KCSN or not. Please take care when posting personal information; we cannot be responsible for the privacy of any identifiable information that you choose to post in our online community.
Access to your personal information
If you have registered to use our patient registry, you can sign into your account to access and update your information.
You have the right to request a copy of all the personal information that we hold about you under the EU General Data Protection Regulation 2018 (for which we may charge a small fee). If you believe any information we are holding about you is incorrect or incomplete, please write or email us as soon as possible. We will promptly correct any information found to be incorrect.
You have the right to request deletion of your personal information at any time and for any reason. If you wish to have your personal information removed from our database, or you want to receive a copy of the information that we hold, please email us.
Security and links
In accordance with best practice, we have made every effort to safeguard and secure the personal information that we receive in order to prevent unauthorised access or disclosure.
If you use standard email to communicate with us, including email links and email forms on this website, please be aware this may be routed via third party internet providers and may not be secure.
Our website contains links to websites run by other organisations; we are not responsible for the privacy practices of these organisations and we do not have any control over third party websites. Therefore, we cannot be responsible for the protection and privacy of any information you provide whilst visiting other sites, and you should read their privacy policies carefully.
What are cookies?
Cookies are small text files sent by web servers and web browsers, which retrieve information about your visit to our site; for example, how you entered our site, how you navigated through the site, and what information was of interest to you. The information is sent back to the server and used to identify and track web browsers.
The cookies identify you merely as a reference number. We do not record personal information.
Cookies on our website
Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you.
Cookies help us improve our website to make it better and easier for you to use. We only use this information for statistical analysis purposes and to improve the services we provide.
Types of cookies
There are two main types of cookies:
· ‘First party cookies’ are served directly by the website operator to your computer, and recognise your computer when it revisits the website. These cookies also remember your preferences as you browse the site
· ‘Third party cookies’ are served by a service provider on behalf of the website operator, and are used for website analytics or advertising purposes.
Cookies may also be ‘session cookies’ or ‘persistent cookies’. Session cookies are automatically removed from your computer when you close your browser. Persistent cookies remain on your computer until an expiry date specified in the cookie itself or until you take action yourself to clean/remove them from your computer.
You can choose to accept or decline cookies at the time you enter our website. Most web browsers automatically accept cookies, but you can usually modify your browser’s privacy settings to alert you to cookies and to decline them if you prefer.
3. Website terms and conditions
By entering our website, you agree and are bound by the following terms and conditions:
This website is owned by KCSN. Any use made of this site is subject to these terms and conditions. KCSN may, from time to time and at its sole discretion, update or revise these terms and conditions by amending the text on this page. We will notify you of any changes that are made to our website policies, and you should check this page to make sure you are happy with any changes made.
Use of the website
You agree to use this site only for lawful purposes, and in a manner which does not infringe the rights, or restrict, or inhibit the use and enjoyment of the site by any third party.
Apart from the password-protected patient registry, the information contained in this website is available for anyone to use for their own purposes, provided the information is not reproduced on any other website or used for commercial gain.
No part of the website is to be copied, stored, or transmitted in any form without the written permission of KCSN.
There are links to other websites from our website to increase the scope and usefulness of the information contained on our site, and which we hope you will find interesting. However, we are not responsible for the content of these websites, or the accuracy of the information they hold.
Our website provides general information only, and none of the information contained within our site shall be deemed to constitute medical advice in any way. You should seek appropriate medical advice or guidance from your doctor or health care team in relation to any medical condition.
Accuracy of the website
We have taken great care to ensure the content of this website is up-to-date and free from errors. However, we cannot guarantee that the information contained in this site will be completely error free, or that this site or the server that makes it available are free of viruses or bugs, or that defects will be identified and rectified. If you notice any defects or errors on our website, we would be grateful if you could notify us by email.
Images and photographs
In order to protect the privacy of the individuals featured on the website, please do not download or distribute photographs or stories from our website without obtaining express written permission to do so from KCSN. If we are made aware of such activity, you may be subject to legal action by KCSN.
4. Monitoring and review
This policy will be monitored by the KCSN management team annually to judge its effectiveness, and will be updated in accordance with changes in the law as appropriate. We will report to the Board of Trustees on any actions or activities undertaken that are covered by this policy. Any information provided by consultants, contractors, volunteers, trustees or members of the KCSN or their families for monitoring purposes will be used only for these purposes, and will be dealt with in accordance with the EU General Data Protection Regulation 2018.
Policy Updated: June 2019
Next Review: June 2021