JDR Learn Tool Privacy Notice

Content last updated: 14 May 2024. Changes made to address change of legal body from CRNCC to RDNCC under new contract from 1 April 2024.  Minor change to "Destruction of Data" section - first bullet point. Change of presentation on site to show all content on one page but also leave distinct site links to separate pages.

The Department of Health and Social Care  ("DHSC”) is the Data Controller for JDR Learn  under the Data Protection Act 2018, the UK GDPR, and the General Data Protection Regulation (EU) 2016/679 ("Data Protection Laws"). 

The University of Leeds (“The Host Organisation”) is the Data Processor for the JDR Learn. The University of Leeds provides the National Institute for Health Research (“NIHR”) Research Delivery Network Coordinating Centre (“RDNCC”) on behalf of the Department of Health and Social Care and the RDNCC is responsible for the processing of your personal data. 

About the NIHR Clinical Research Network Coordinating Centre 

The NIHR Research Delivery Network Coordinating Centre (RDNCC) is a service provided by the University of Leeds, with contracted maintenance by PA Consulting Services Limited.

The RDNCC manages the NIHR Research Delivery Network ("RDN") on behalf of the Department of Health and Social Care.  The RDN makes it possible for patients and health professionals across England to participate in clinical research studies within the NHS.  The RDN provides the infrastructure that allows high-quality clinical research funded by charities, research funders and life-sciences industry to be undertaken throughout the NHS.  The RDN works with patients and the public to make sure their needs are placed at the heart of all research, and provides opportunities for patients to gain earlier access to new and better treatments through research participation. The RDN provides practical help in identifying and recruiting patients for clinical research studies, so that researchers can be confident of completing the study on time and as planned.

The RDN supports around 5,000 clinical research studies each year.  

The information we collect 

The RDNCC collects your personal data on behalf of and as directed by the Department of Health and Social Care.

When you use the JDR Learn tool, we use technology to collect information both directly and indirectly. We request the following personal details from you directly on our certification form:

• Name

• Email address

• Job title

• The organisation you work for

When you use JDR Learn the system will collect information indirectly such as your internet address, which is commonplace across all internet services. This information is then kept in internet access logs. The tool also uses cookies that save and retrieve information about your visit to our site, how you navigated through the site and what information was of interest to you, all of which help us to develop the service going forward. The cookies used identify you only as a number but you can disable them by changing the settings in the preferences or options menu of your internet browser. However, disabling cookies may affect our ability to provide services to you: if certain cookies are disabled you may not be able to access the service.

The personal data we collect may vary depending on the nature of your interaction with RDN. However, we always protect your personal data within the terms of this Privacy Notice.

How and why we use your personal data 

We collect and use this personal data so that:

• We can provide you with a Join Dementia Research Learn Tool certificate of completion by email;

• We can report on the numbers of healthcare professionals who complete the Learn tool. This data will always be anonymised and aggregated;

• We may occasionally contact you to update you about new initiatives on Join Dementia Research; you can unsubscribe from this service at any time;

• We can tailor services provided to you, including keeping you informed.

How we protect your data 

The information you provide in JDR Learn will be processed and stored electronically by Mailchimp in the USA for the purposes outlined above. Mailchimp and Privacy for Visitors.  Section 4 provides further information on how your data is used and protected.

We will store your data in Mailchimp for a maximum of three years. You can contact us to request we remove your personal information at any time and we will do so within five working days. Please contact joindementiaresearch@nihr.ac.uk to notify us if you wish your information to be removed and please mention the JDR Learn Tool specifically.

Who do we share your personal data with 

Your personal data is used for reporting and mailing purposes only. The answers you provide on the Learn Tool form are held in WordPress, and a subset of this information is held in MailChimp for the purposes of sending your certificate to you. The WordPress data is used for reporting on who has completed the tool (reported data is always done anonymously). Going forward, JDR Learn may use the MailChimp list to contact users with updates on JDR but there are no firm plans to do this currently.

Further privacy information for MailChimp can be found here, and for WordPress here.

Your rights over your personal data 

The Data Protection Officer for the RDNCC is:

• Name of Data Protection Officer: Lee Cramp

• Address: Department of Health and Social Care,  1st Floor North, 39 Victoria Street, Westminster, London, SW1H 0EU

• Email - data_protection@dhsc.gov.uk 

As a data subject, you have the following rights under the Data Protection Laws: 

• the right of access to personal data relating to you 

• the right to correct any mistakes in your information

• the right to ask us to stop contacting you with direct marketing

• rights in relation to automated decision making  

• the right to restrict or prevent your personal data being processed

• the right to have your personal data ported to another data controller (e.g. if you decide to contract with a different supplier).

• the right to erasure

• the right to withdraw consent

These rights are explained in more detail on the Individual Rights section of the Guide to the General Data Protection Regulations on the Information Commissioner's Office website.

If you wish to exercise any of your data subject rights, please contact the NIHR Service Desk in the first instance - either:  

• Write to The NIHR Service Desk, Back Lane, Melbourn, Royston, SG8 6DP

• or Email: gdpr_requests@nihr.ac.uk 

We will respond in a timely manner to any rights that you wish to exercise, and for Subject Access Requests (SARs) this has to be  within a month of receiving your request unless the request is particularly complex.

Contacting the Regulator 

It is important that you ensure you have read this privacy notice - and if you do not think that we have processed your data in accordance with this privacy notice - you should let us know as soon as possible.  

Similarly, you may complain to the Information Commissioner's Office. Information about how to do this is available at www.ico.org.uk.