KIN's GDPR Privacy Policy

At Kidney Information Network (KIN) we are passionate about ensuring that you have the best experience, whether you are a visitor, or you want to share information to support others, without having to worry about the safety of your information

Outlined below is how and why we collect, use, and share your personal information, and your rights in relation to that data. If you have any questions, please contact us. This policy will be updated from time to time, so please familiarise yourself with the latest version.

We are committed to keeping your details private.

This Privacy Policy covers people who engage with KIN through our website, blog contributions, and Facebook groups.

Who are we?

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. 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) and has since expanded to other regions in the UK.

Research

By participating in 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. This may involve surveys, interviews, and analysing conversations to map key themes. We will inform users of the Facebook groups when we are actively conducting a research study. All of our studies are approved by the University of Salford ethical committee and are conducted at the highest research ethics standard.

We would like to study the key issues and topics raised on the blogs and Facebook groups 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 website or within KIN Facebook groups 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

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.

Blogs (Stories)

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 encourage every user to post on our website with an anonymous username if they wish to maintain complete privacy.
We chose not to collect your identifiable data to ensure that you can post anonymously.
We may use your email to get in touch with you about the content you post (see “Restricting Your Posts” section below.) Apart from that we will not use your information when you create a blog post to send you marketing information, spam emails, or other unwanted contact.

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.

Media

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 copyright issues, we can only accept photos taken by yourself. If you prefer not to provide a photo, we may use a stock image.

Data Security

KIN is committed to keeping your information secure by utilizing strict controls and processes to prevent unauthorized access and protect your data. All communications between your browser and the website are encrypted to ensure confidentiality.

Our servers and backups are securely stored within the UK, and we have implemented a web application firewall, as well as bot protection measures, to provide additional safeguards against malicious activity. It is important to note that we do not store any patient or user accounts, nor do we collect or retain any personal information of site visitors.

However, despite our best efforts, in the unfortunate event of a security breach, we cannot guarantee that your data (such as profile information, blog posts, or comments) will remain completely secure or undamaged (e.g., blog posts may be lost, or your email address could be compromised). Please remember that any posts made on KIN are at your own risk.

Cookies

When you enter the website, we will set up several cookies to save your information and your screen display choices. If you edit or publish an article or blog, 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.

The KIN website visitors who do not wish to have cookies placed on their computers should set their browsers to refuse cookies before using the website.

Analytics

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 Google Analytics Help

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.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that 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.

Data storage

All information is stored on a server managed by WordPress. Backups are stored offsite, and we have several security layers in place. We are no longer storing any user login information including profile information.

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, 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 info@kinet.site.

Complaints

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
M5 4WT

Or email foi@salford.ac.uk

You can contact the ICO by calling 0303 123 1113 or go online to www.ico.org.uk/concerns or email via https://ico.org.uk/global/contact-us/email/

Consent

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 info@kinet.site

This statement was last reviewed by a member of the KIN team on 7 October 2024.