Last Review date: 17 August 2018

1. Introduction

Join Dementia Research aims to work in a transparent manner, making information about its work and progress publicly available, and putting volunteers in control of their own personal data as much as possible. We abide by the requirements of the General Data Protection Regulation (GDPR), the Data Protection Act 2018, the Environmental Information Regulations and the Freedom of Information Act.

If you would like information about our work, please contact the Join Dementia Research team in the first instance and we will do our best to help you. You can email manager.jdr@nihr.ac.uk or write to us at Join Dementia Research, Ground floor, Minerva house, 3-5 Montague Close, London, SE1 9BB.

You can also use your formal rights to request information under the Freedom of Information scheme or to make a subject access request. These are routed through the Department of Health and Social Care (DHSC) and a special NIHR team respectively.

2. Freedom of Information Requests

The Freedom of Information Act 2000 is an Act of Parliament and the Environmental Information Regulations is EU legislation that creates a public “right of access” to information held by public authorities.

Join Dementia Research operates as part of the National Institute for Health Research Clinical Research Network Coordinating Centre on the behalf of the DHSC.

The DHSC takes full responsibility for responding to any Environmental Information Regulations or Freedom of Information requests. Further information on the Freedom on Information process can be found on the gov.uk website.

Members of the public should direct any such request to the DHSC, either:

  • online using the FOI contact form;
  • or write to: Ministerial Correspondence and Public Enquiries Unit, Department of Health and Social Care , 39 Victoria Street, London, SW1H 0EU, United Kingdom.

All requests will be routed through to the DHSC, and responded to in accordance with the DHSC Enquiries Process. The Join Dementia Research service will supply the DHSC with relevant information, and the DHSC will, in turn, respond back to the enquirer.

3. Subject Access Requests

Any request for personal information held about an individual user of Join
Dementia Research must be handled in accordance with the GDPR and Data Protection Act 2018 as outlined below.

A subject access request is one of the main rights of the Data Protection Act 2018. It gives people the right to access their own personal information held and processed by any organisation.

Any individual whose data is being processed by Join Dementia Research can ask to see this or be provided with a copy of this within the relevant time frames provided by the Data Protection Act 2018 and GDPR (i.e. within one month of receipt of the request). Only information relating to the requester can be released. Any information relating to a third party must only ever be released if in accordance with the Data Protection Act.

If you wish to make a data subject access request or exercise any of your data subject rights, please contact the NIHR Service Desk. Either:

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.