KIN POLICY / GDPR READINESS
Who are we?
The Kidney Information Network (KIN) is a joint venture between patients with chronic kidney disease, clinicians and the University of Salford (led by Dr Cristina Vasilica, Prof Paula Ormandy and Mr Rob Finnigan). We are supported by local administrators (see KIN Team).
KIN was initially set up in Greater Manchester (2013) as ‘The Greater Manchester Kidney Information Network (GMKIN)’. In 2019 we expanded to Cheshire and Merseyside area (CaMKIN).
KIN works to initiate positive social change within the local renal community of patients, who struggle with isolation and access to real life information such as coping mechanisms, expectations, symptoms. The community was built using social media, enabling patients to network, create and share information with each other.
- Closed Facebook peer support community https://www.facebook.com/groups/543758388988691/
- Twitter account https://twitter.com/GMKINet,
- Blogging and news-sharing platform.
- Closed Facebook peer support community https://www.facebook.com/groups/653509575068153/
- Twitter account
- Blogging and news-sharing platform.
Before you join the group familiarise yourself with the Facebook group netiquette [link to netiquette].
User generated content
This website is based on the principles of ‘user generated content’, which means that it includes information provided by other users, which may not necessarily apply to you. Before using the information seen on this website in any way please ensure that you contact and check with your local healthcare team. Please remember that every individual is unique and will have different health requirements.
The views expressed on this site are of the individuals and do not necessarily reflect the views of local hospital trusts, Kidney Patient Associations, or University of Salford.
Upon your registration to the KIN network, you give us consent to maintain a dialogue with you until you either opt out (which you can do at any time by contacting us) or if we decide to cease providing this service.
We may choose to use the dialogue and the content you create on the website such as blogs and comments you post on the closed Facebook group for research purposes.
We would like to study the key issues and topics raised on the blogs to get a picture of the issues that matter most to you. This will enable us to improve the information we provide and explore ways to better support kidney patients and their families to enhance quality of life. Any analysis of the conversations or data on the site will be completely anonymous and it will not be possible to identify members.
In this circumstance we will:
- Ensure data is accurate
- Collect it for legitimate purposes that are clearly stated
- Provide ability for amends/ deletion of data
- The data will be used for non-commercial, scholarly research and teaching
- None of the details and demographics of the group members will be revealed in the research. More precisely, Identifiers such us email, IP, pseudonyms, localisation of network, and direct quotes, which may be attributable via search engines will not be included in any material that will be made available to public
- We will respect the contextual integrity of data, maintaining the flow of information and the meaning of it
How the website operates, and data collected from you
KIN is committed to keeping your information secure by utilising controls and processes to prevent unauthorised access and protect your data. All communications between your browser and the website are encrypted for security.
Unfortunately, in the case of any security breach we cannot guarantee that your data (profile, blog, comments) will remain completely secure and undamaged (blog posts may be lost, your emails may be stolen). Please remember that registration and any posts on KIN are made entirely at your own risk.
If you choose when you submit your email address to receive a quarterly e-newsletter from KIN, the email address is stored on MailChimp. This is a recognised service provision used by millions of customers around the world. Please see their policy for more details (https://mailchimp.com/about/security/#Protection_from_Data_Loss%2C_Corruption)
- We will not collect any data from you, apart from username, email address, and location area (such as Greater Manchester, Cheshire and Merseyside, UK and International).
- We chose not to collect your identifiable data to ensure that you can post anonymously.
- On registration there is a profile section that you may choose to complete, please be aware that the details are available to the wider network and public
- As a registered user you can submit blogs, post comments and receive notifications
- Upon your registration, you consent us to maintain a dialogue with you until you either opt out (which you can do at any time by contacting us) or if we decide to cease providing this service.
Registered users are permitted to submit blogs to share personal stories and experiences. The blogs can be posted to public or protected by a password. Password protected can be read only administrators and those with a password.
When visitors leave comments on the site, we collect the data shown in the comments form, alongside the visitor’s IP address and browser user agent string to help spam detection.
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website. Due to copyrights issues, we can only accept photos taken by yourself. If you prefer not to provide a photo, we may use a stock image.
Restricting your posts
All posts, comments and media are subject to moderation. The KIN team may choose not to post any contribution from you that:
- Could cause offence or distress to other group members
- Will set up a negative example for others in the group
- Specifically criticises or abuses any named individual including fellow group members, healthcare professionals or carers. Please remember that you can always post your concerns about service without giving names and/or using abusive language.
- We will notify you if a post is not made public and we will explain the reasons why the decision was made.
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave further comments.
If you have an account and you log into this site, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.
When you log in, we will also set up several cookies to save your login information and your screen display choices. If you select “Remember Me”, your login will persist. If you log out of your account, the login cookies will be removed.
If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited.
We are using Google analytics to monitor traffic to the website. Google Analytics collects first-party cookies, data related to the device/browser, IP address and on-site/app activities to measure and report statistics about user interactions on the websites and/or apps that use Google Analytics. No identifiable data is collected through analytics, see more details https://support.google.com/analytics/topic/2919631?hl=en&ref_topic=1008008
Embedded content from other websites
Articles on this site may include embedded content such as videos, images, and articles. Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
How long we retain your data
If you post a blog its content will be retained indefinitely.
If you leave a comment, the comment and its metadata are retained indefinitely.
For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
Data is held primarily in the United Kingdom and the EU, using different (multiple) servers by the Funplace2b Digital http://funplace2bdigital.co.uk/
The data used for research purposes will be stored on secure servers at the University of Salford.
What rights you have over your data
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you or transfer to another use. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
Your rights as a data subject
- At any point, whilst KIN stores and processes your personal data, all data subjects, have the following rights:
- Right of access – you have the right to request a copy of the information that we hold about you.
- Right of rectification – you have a right to correct data that we hold about you that is inaccurate or incomplete.
- Right to be forgotten – in certain circumstances you can ask for the data we hold about you to be erased from our records.
- Right to object – you have the right to object to certain types of processing such as direct marketing.
In the event, that KIN refuses your request under rights of access, we will provide you with a reason as to why, which you have the right to legally challenge.
A copy of your driving licence, passport, birth certificate and a utility bill not older than three months is required as identity proof. However, if you hold an anonymous profile, additional information (e.g. proof of email) might be required to identify your profile
A minimum of one piece of photographic ID listed above and a supporting document is required. If the KIN is dissatisfied with the quality, further information may be sought before personal data can be released.
All requests should be made to the firstname.lastname@example.org
In the event, that you wish to make a compliant about how your personal data is being processed by KIN or its partners, you have the right to complain to the Data Protection Officer at the University of Salford using the contact details below. If you do not get a response within 30 days you can complain further to the Information Commissioner’s Office (ICO).
The details for each of these contacts are:
Data Protection Officer
Legal and Governance Directorate
Maxwell 6th floor
University of Salford
Or email email@example.com
You can contact the ICO by calling 0303 123 1113 or go online to www.ico.org.uk/concerns (opens in a new window; please note we can’t be responsible for the content of external websites) or email via: https://ico.org.uk/global/contact-us/email/
Acceptance of terms
By agreeing to this privacy notice you are consenting to KIN processing your personal data for the purposes outlined. You can withdraw consent at any time by contacting firstname.lastname@example.org