Data Protection Privacy Notice

This page explains how the UKKA collects and processes data for its members and those who use this website.
For information on how the UKKA collects and processes patient information, please see our Patient Privacy Notice.

Introduction

This document explains why information is collected about you by the UK Kidney Association (UKKA) and how your information may be used. This is called a Fair Processing Notice or Privacy Notice. It describes how the UKKA collects, uses and processes your personal data and associated information and how, in doing so, it complies with its legal obligations to members. Your privacy is important and the UKKA is committed to safeguarding your data privacy rights.

This notice will address the following areas:

  • Key definitions
  • What is the UKKA?
  • Why the UKKA collects your information
  • What personal information does the UKKA collect?
  • Where does the UKKA collect your information from?
  • How does the UKKA use your information?
  • Who your information is shared with
  • The UKKA’s lawful basis for collecting your information
  • How the UKKA maintains the confidentiality of your information
  • The UKKA and partner organisations
  • How long your information will be stored
  • Your individual rights
  • Objections and complaints
  • How to contact the UKKA
  • Changes to this notice

Key definitions

Data controller – the organisation, person or persons who determine the purposes and means of processing personal data. For the purpose of this notice, the data controller is the Renal Association (the legal entity for the UKKA).

Data processor – in relation to your personal data, means any person (other than an employee of the data controller) who processes the data on behalf of the data controller. Examples of the data processors engaged by the UKKA can be found in the section ‘Who your information is shared with?’

Data protection officer – an existing employee or externally appointed person in place to assist in monitoring internal compliance, informing and advising on data protection obligations, providing advice regarding Data Protection Impact Assessments (DPIAs) and acting as a contact point for data subjects and the supervisory authority. The contact details for the UKKA’s data protection officer can be found at the end of this notice.

What is the UK Kidney Association?

The UK Kidney Association (UKKA) is a trading name of the Renal Association (RA), a not for profit organisation registered with the Charity Commission (charity number 800733) as a membership organisation for healthcare professionals caring for people with kidney disease. Full details of their work can be found here: https://renal.org/

Why the UKKA collects your information?

The UKKA collects your information in order to maintain records on your current and past standing as a member of the UKKA or user of UKKA services, in order to provide you with membership of the UKKA, information about products and services such as events, and details of UKKA activities.

What personal information does the UKKA collect?

Membership

To become a member of the UKKA, you will be asked to fill out an application form collecting the following categories of information about you:

  • Basic details – name, date of birth, gender, job title and affiliation
  • Contact details – address, email address, telephone number(s)

During your membership, the UKKA will also keep a record of your membership of UKKA Councils, special interest groups, sections, other UKKA groups, and attendance at our events.

Newsletters

If you sign up for one of the UKKA’s newsletters, the UKKA will collect your name and email address only.

UK Kidney Week

To attend UK Kidney Week, a national event hosted by the RA, you will need to provide the following categories of information about yourself:

  • Basic details – name, date of birth, gender, job title and affiliation
  • Contact details – address, email address, telephone number(s)

Additional information such as dietary and other requirements may also be collected. This information will usually be collected directly from you, though maybe collected through an affiliated group if you are attending as part of a group booking.

The “renal.org” website

Use of cookies by the UKKA

Cookies are small text files that are placed on your computer by websites that you visit. They are widely used in order to make websites work, or work more efficiently, as well as to provide information to the owners of the site. Most web browsers allow you some control of most cookies through the browser settings or through free software such as Super-Antispyware or Cleaner. To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, visit the All About Cookies website at http://www.allaboutcookies.org.

Demographics

The UKKA’s webserver records your visits to help the UKKA understand how you use the site so it can improve the site and provide better services.

Use of links

Throughout the UKKA’s web pages, the organisation provides links to other sites which may contain information of interest to site visitors. The UKKA takes no responsibility for, and exercises no control over, the organisations, their views, or the accuracy of the information contained on other servers. Creating a text link from another website to the UKKA’s website does not require permission.

Where does the UKKA collect your data from?

The UKKA collects your information through the renal.org website, the completion of a membership application form or from information given to the UKKA directly by you or your affiliates (where appropriate).

How does the UKKA use your information?

Membership

The UKKA uses the information you provide via your application form to process your membership, collect your membership fee, and provide the benefits, services and information that come with membership.

During your membership, the UKKA will also maintain records of your involvement across its councils, special interest groups, sections, and attendance at its events to ensure that you receive information and services suitable to your membership. 

The UKKA will contact you in line with your contact and marketing preferences. You can change your preferences or opt out of communications at any time. Instructions on how to do so can be found in the ‘Your individual rights’ section below.

Newsletters

The information you provide when subscribing to the UKKA’s newsletters will be stored in a secured mailing list and used only to send you a copy of the newsletter(s) that you have subscribed to.

You can opt out of receiving the newsletter(s) at any time. Instructions on how to do so can be found in the ‘Your individual rights’ section below. You will also be able to control what information you receive from the UKKA by following the “update your preferences” link at the bottom of each newsletter.

UK Kidney Week

The RA uses the information you provide when signing up for UK Kidney Week to enable you to attend the conference and engage in the sessions and other offerings.  

Who your information is shared with

Membership

The UKKA will only share your membership information with a limited number of third parties in order to provide you with the benefits and services of membership. These include:

  • The UKKA’s bank and payment processing services – to process your membership fee
  • A marketing and communication platform – to manage mailing lists and send out communications
  • Kidney Care UK (clinical directors only) to allow for the distribution of material promoting kidney health and related information for patients
  • Venues – to organise and run UKKA events

Newsletters

The information you give to the UKKA when you subscribe to its newsletters will not be shared by any third parties.

UK Kidney Week

To run UK Kidney Week the RA engages a third-party organisation to manage the preparation and running of the conference. Executive Business Support Ltd are a data processor for the RA providing administration and event organisation services requiring them to process your personal data on behalf of the RA.

The UKKA’s lawful basis for collecting your information

All of the legal bases listed in this section are subject to safeguards required by the General Data Protection Regulation (GDPR) and with due consideration to your rights as an individual.

Membership

The UKKA has a legitimate interest in continuing its charitable purposes by enabling it to provide you with member benefits or services as a member (Article 6(1)(f) of the GDPR).

Newsletters

The UKKA relies on your consent to send you its newsletter(s). If you wish to withdraw your consent, you can do so by following the instructions in the ‘Your individual rights’ section below.

UK Kidney Week

The UKKA has a legitimate interest in providing a national conference which further benefits the kidney community by the sharing of knowledge and networking.

How the UKKA maintains the confidentiality of your information

The UKKA is very careful with the information you provide. The UKKA has strict rules about how your data are used and who can use it. The UKKA is committed to protecting your privacy and will only use information collected lawfully in accordance with the:

  • Data Protection Act (2018)
  • General Data Protection Regulation (GDPR – EU) (2016/679)
  • Human Rights Act (1998)
  • Common Law in England and Wales, Scots Law in Scotland, and Northern Ireland Law in Northern Ireland

The UKKA will keep your information secure in accordance with its legal responsibilities; including taking reasonable steps to safeguard against your information being accessed unlawfully or maliciously by a third party, accidentally lost, destroyed or damaged.

The UKKA will not disclose your information to third parties without your consent unless there are exceptional circumstances such as situations when the health and safety of others are at risk, or where the law permits information to be passed on.

All employees of the UK Kidney Association are asked to sign a confidentiality agreement as part of their employment contract. If a sub-contractor acts as a data processor for the UKKA an appropriate contract will be established for the processing of your information.

How long your information will be stored by the UKKA

Membership

The UKKA will retain your information for the duration of your membership, and then for one further year after the end of your membership. At the end of that one year, the UKKA will delete your information with the exception of any financial information relating to your membership (e.g. records of membership fee payments) which will be held for six years in accordance with legal audit requirements.

Newsletters

The UKKA will only keep your subscription information for as long as you continue to be subscribed to the newsletter(s). When you no longer wish to be subscribed, the UKKA will delete your information.

UK Kidney Week

The information collected about UK Kidney Week delegates will be retained by Executive Business Solutions Ltd (a data processor for the UKKA) for a period of one year after the event. At the end of that one year, EBS  will delete your information with the exception of any financial information relating to your membership (e.g. records of membership fee payments) which will be held for six years in accordance with legal audit requirements.

Your individual rights

This next section describes how you can access, amend, erase and move your personal data, withdraw your consent and object to or complain about the data that the UKKA holds about you.

Right to access your data (data subject access requests)

You have the right to see or have a copy of your personal information held by the UKKA. If you want to receive a copy of your information, you should make a written request to the UKKA (see the section below on ‘How to contact the UKKA’). The UKKA will normally provide your information within one month of receiving all the information needed from you to respond to your request.   

Right to rectification (right to amend your data)

You have the right to have your information amended. If you want to amend your information held by the UKKA, you should make a written request to the UKKA (see the section below on ‘How to contact the UKKA’). The UKKA will normally provide your information within one month of receiving all the information needed from you to respond to your request.     

Right to withdraw consent for the UKKA to process your data

If you are happy for the UKKA to use your information you need to do nothing further. You have the right to withdraw your consent for the UKKA to process your information at any time. Please be aware that without your consent for the UKKA to process your personal data, you will be unable to maintain membership of the UKKA or receive the information and services that come with membership.  

Should you wish to withdraw your consent you can do so by contacting the UKKA in writing using the details found in the ‘How to contact the UKKA’ section below.

Alternatively, if you wish to unsubscribe from the UKKA’s newsletter(s) or other communications you can do so by clicking the ‘Unsubscribe’ link at the bottom of the communication and follow the instructions from there.            
 

Right to have your information erased

You can request in writing to have your identifiable information erased at any time. This right does not extend to information that has been anonymised.

The UKKA will respond to your request within one month. Please see the section ‘How to contact the UKKA for our contact details.

Right of data portability (right to move your data)

You have the right to request a secure transfer of your data from the UKKA to another data controller. The UKKA will transfer your data to you or directly to a third party of your choosing in an accessible format. You should make the request in writing to the UKKA (see the section below on ‘How to contact the UKKA’). No fee will be payable and the information will be transferred within one month.

Right to object

The UKKA uses your information for the purposes described. If you do not agree with this you have the right to object. See the section below on ‘Objections and complaints’ that explains who to contact if you have an objection. The UKKA will respond to your objection within a month (although we may be allowed to extend this period in certain cases).

Objections and complaints

Should you have any concerns about how your information is managed, please submit them in writing to the data protection officer for the UKKA (see the section below on ‘How to contact the UKKA’). If you are still unhappy following a review by the data protection officer, you have a right to lodge a complaint with the Information Commissioner:

Information Commissioner:
Wycliffe house
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 01625 545745
https://ico.org.uk/

How to contact the UKKA

If you have any questions regarding this privacy notice, how your data are used or wish to exercise your rights, please contact the UKKA on the details below.

The UKKA’s Data Protection Officer is: Mr Tom Gray

He can be contacted by:

Post
Tom Gray
UK Kidney Association c/o the Renal Association
Brandon House, Building 20a1
Southmead Road
Bristol
BS34 7RR

Tel: 0117 4148 157

Email: tom.gray@renalregistry.nhs.uk           

Alternatively, you can contact:

The Senior Information Risk Owner – Mr Ron Cullen
Email: ron.cullen@renal.org     

Or

UK Renal Registry Head of Operations – Dr Retha Steenkamp
Email: retha.steenkamp@renalregistry.nhs.uk   

Changes to this notice

The UKKA may amend this privacy notice from time to time. If you are dissatisfied with any aspect of this privacy notice, please contact the data protection officer.

Guidelines

NICE accredited clinical practice guidelines 

Available here

23rd Annual Report

Analyses about the care provided to patients at UK renal centres.

Read the report

UKRR AKI Report

A report on the nationwide collection of AKI warning test scores. 

Read the report