ODP 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 the Open Data Platform "[ODP]"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 "[ODP". The University of Leeds provides the National Institute for Health and Care 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.

The RDNCC collects information directly and indirectly. When you use ODP, we use technology to collect information indirectly - such as your internet address. This is commonplace across all internet services to enable the investigation of issues such as malicious use. This information is then kept in our internet access logs. 

We collect information directly from you in a number of ways. One way is by using cookies. Cookies are small files of information that save and retrieve information about your visit to our site, such as how you entered our site, how you navigated through the site and what information was of interest to you. This information is collected for a number of reasons, for example, to help develop the website and associated services. 

The cookies we use identify you only as a number. If you are uncomfortable about the use of cookies, you can disable them by changing the settings in the preferences or options menu in 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.

A single sign on product, the Identity Gateway is used to manage your login credentials for  RDNCC services and your registration information and associated cookies held there for authentication purposes. Further information is available on the IDG Privacy Notice pages.

The only data stored on ODP will be: 

• Navigation data – data on how you move around our site

• IP address - ODP uses it and tags it in log files

• Personal information – your first name, last name, email address, and organisation

• Your Username (email address) and password for this system.

The personal data we collect may vary depending on the nature of your interaction with RDN.  Specifically we may capture the following information about study contacts (including Research Activity Coordinators, Study Coordinators and Chief Investigators):

- Title

- First Name *

- Last Name *

- Business Email Address *

- Organisational affiliation

- ORCiD (Open Researcher and Contributor ID)

- Business Address, including postcode

- Business Telephone number

- Business Mobile number

- Affiliations with studies on the portfolio, including the role that the person plays in that study 

* Fields are mandatory

However, we always protect your personal data within the terms of this Privacy Notice.

How and why we use your personal data

Use of personal data

• Analytics – We use navigation data and usernames from QlikView sessions (ODP Activity) to monitor and improve ODP applications

• Personalisation – We use navigation data and personal information to enable us to tailor the services provided to you, including keeping you informed.

• Data Security - We use usernames and passwords to ensure you only access appropriate data.

How we protect your data

We are committed to ensuring that your information is secure.  We use leading technologies and encryption software to safeguard your data, and maintain strict security standards to prevent any unauthorised access to it.  However, given that transmitting information over the internet cannot be completely secure, we can’t guarantee the security of your data in transit. 

ODP  may contain links to other websites of interest outside the RDNCC.  This privacy policy only applies to our websites, systems and services, and doesn’t cover other websites and services that we may link to.  You should exercise caution and look at the privacy notice applicable to the website/service in question. 

The security of the ODP website is managed by the NIHR Information Systems Function, on behalf of the Department of Health and Social Care. This Function has the appropriate technical expertise to protect against unlawful processing and/or accidental loss of information.

ODP is hosted on the Amazon Web Services (AWS) platform, a cloud-based software platform which provides for disaster recovery processes across its servers, which are all located within the European Economic Area (EEA). None of the data contained within ODP  will go outside the UK or the EEA. The AWS platform is accredited to ISO 27001 security standards. 

We will not sell your personal data.  We will not disclose your personal data to third parties outside of the RDNCC, unless we have your explicit permission, or are required by law to do so. 

We will hold the data for as long as we are providing you services and for as long as you agree to this.  We will retain your data for varying amounts of time depending on the nature of your interactions with ODP:

• We only store data that is necessary for specific purposes 

• We will not store your data for longer than is necessary

• Your data will be securely deleted when no longer needed for the purpose(s). 

Destruction of Data

• This services falls within the scope of NIHR RDNCC's  ISO27001:2022 and Cyber Essentials certifications

Who we share your personal data with

• We will never share personal information with other third parties without your consent

• All partner organisations are either contractually obliged or have signed up to a Data Processing Agreement, which prevents them from sharing your data with other non-authorised third parties and provides for the secure disposal of this data.

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.