We take your privacy seriously, and this privacy statement sets out more detail about who is responsible for protecting your data, the information we collect, how we store and use it, and your rights.
If you have any questions or concerns, or would like us to stop holding or using your data at any time, please let us know through the details on the contact us page.
This privacy notice tells you what to expect when Join Dementia Research collects personal information. It applies to information we collect about:
Visitors to our website
Those who use Join Dementia Research to sign up for account registration with the service
Individuals with queries or complaints in relation to data protection, or freedom of information
How do we use your information?
We analyse information to help us identify ways to improve our website and services. We may also use information for other purposes, which are explained to you when this information is collected.
Our volunteers who register with Join Dementia Research provide personal information about themselves and their health, which is then shared with approved researchers looking to match volunteers to dementia research studies.
What information do we collect when you use Join Dementia Research?
We collect information directly from you in a number of ways. These include via the website or web forms to collect volunteer information, from written forms posted in, from emails and from telephone or in person conversations. When you register as a volunteer with Join Dementia Research, you consent to this information being recorded into your record on the Join Dementia Research system. This information is held securely (see below) for the purposes of matching you or the person who you are completing the form on behalf of, to opportunities to participate in and find out more about dementia research.
When you use Join Dementia Research, 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. 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.
See our separate Cookies statement for more information on the cookies we use.
Links to other websites
The social media sites that Join Dementia Research links to are third-party sites and Join Dementia Research does not control the way these sites use your information. If you choose to access these sites using the links provided, the operators of these sites may collect information from you that may be used by them in accordance with their privacy policies, which may differ from ours.
You should read their privacy policies carefully to find out what happens to any information that is collected by these services when you use them.
How long do we hold this information for?
We will hold the information 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 Join Dementia Research:
We only store data that is necessary for a 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)
It is important to note that due to the nature of healthcare research, it may be necessary to hold information for a lengthy time, including after death. You or your representative can request us to stop holding or using data (for example to contact you), or for it to be anonymised (with personal information that allows individuals to be identified removed) at any time.
Will we disclose your information to, or share it with, other organisations?
If you register with Join Dementia Research, your data is shared with researchers involved in dementia research, including NHS staff and approved researchers working in commercial research organisations, or academic institutions, for the purpose of matching volunteers to opportunities in dementia research.
Your data is also shared with our partner organisations in delivering the Join Dementia Research service, who are the three national Alzheimer's charities: Alzheimer Scotland, Alzheimer's Society and Alzheimer's Research UK. It is also accessible to approved staff within the Clinical Research Network Coordinating Centre and the wider NIHR, including the National Director for Dementia Research office, the partner JDR charities, and IT provider/s, for the purpose of administering the service.
We also share your contact details only with our third party contracted printers who are responsible for sending out welcome books, newsletters and other reminders to those who have registered to use the service.
We ask volunteers to consent to researchers requesting access to their healthcare records. This is strictly limited to accessing records to match volunteers to studies. Join Dementia Research and its partners do not request or access volunteer’s healthcare records held by volunteer’s GPs or hospitals.
We contact NHS Digital approximately twice a year to identify which volunteers have now died. We share basic personal information about volunteers with them so they can screen their records for deaths.
When a volunteer is recorded as having died, we note their research participation and keep an anonymous record of this, and then delete their record.
Navigation data is shared with trusted third parties providing analytics such as Google and Mailchimp. All partner organisations are either contractually obliged or have signed up to a Data Sharing Agreement, which prevents them from sharing your data with other non-authorised third parties and provides for the secure disposal of this data.
We will never share personal information with other third parties without your consent.
Your data is kept under secure conditions
We will take appropriate steps to maintain the security of your data on our service. The open nature of the internet means that data may flow over networks without security measures and may be accessed and used by people other than those for whom the data is intended. Our intention is that this should not happen and we will take appropriate measures to ensure that it does not.
Join Dementia Research is hosted on the Google 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 Join Dementia Research will go outside the UK or the EEA. The Google platform is accredited to ISO 27001 security standards.
Complaints or queries
Join Dementia Research seeks to meet the highest standards when collecting and processing personal information. For this reason, we take any complaints made about this very seriously and we encourage people to feedback and tell us when they feel that our collection and/or use of personal information is unfair, misleading or inappropriate.
If an individual should wish to make a complaint, we create a file containing the details of the complaint. We will only use the personal information we collect to process the complaint and to verify the level of the service we provide.
In cases where the complaint is about an individual, we usually have to disclose the nature of the complaint made. Where the complainant does not wish for their information to be disclosed, we do try to respect this request, however if the complaint results in a disputed disciplinary matter this may not always be realisable.
You can request access to your personal information
You are entitled to know whether we hold any information about you and, if we do, to have access to that information and request that it be corrected if it is inaccurate.
Any such requests should be made in writing to the Register Manager (contact details below).
You also retain the following rights over your data, please let us know if you would like to exercise any of these rights or if you would like any further assistance with your data:
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
How to contact us
Or write to:
The Join Dementia Research Manager
c/o NIHR Clinical Research Network Coordinating Centre
5 Montague House
London SE1 9BB
If you wish to exercise any of your data subject rights, you can also contact the NIHR Service Desk:
Write to The NIHR Service Desk, Back Lane, Melbourn, Royston, SG8 6DP
or Email: email@example.com
Cookies are small information files placed on your device, which are used to improve services for you by, for example:
enabling the service to recognise your device, so you do not need to give the same information repeatedly
recognising when you have already given a username and password, so that you do not need to do so for every subsequent web page you visit
measuring how many people are using the services we provide, so we can make them easier and faster to use
analysing data, anonymously, to help us understand how people interact with government services
When we provide services, we want to make them easy, useful and reliable. Where services are delivered on the internet, this sometimes involves placing small amounts of information on your computer, mobile phone or whatever device you are using to access the internet. This information is held in cookies. You can learn more about cookies from the guidance on cookies at www.gov.uk/help/cookies.
Cookies cannot be used to identify you personally.
See below for further details about cookies you may encounter while visiting the Join Dementia Research website. These details include what information is being held, how long you can expect it to be stored, and how your experience of our website will change if you block individual cookies from being sent to your device.
Main cookies in detail
The only cookies used on Join Dementia Research are for anonymous analysis of your visit to the site and for controlling your secure session while using the site, using the Google Analytics service and a Login session cookie respectively. These are first party cookies and are not tracked across multiple sites.
Google Analytics is used for the anonymous tracking of your use of this site. This cookie is used to store information such as when you visited the site and whether you have been to the site before. There is no personally identifiable information contained within this cookie, but it will use your computer's IP address to determine your geographical location.
It measures numbers and volumes of visitors in order to make sure users’ needs are met, and to understand how services we provide could do better. Google Analytics stores information about what pages you visit, how long you are on the site, how you got here and what you click on. We do not collect or store your personal information (e.g. your name or address) so this information cannot be used to identify who you are. We do not allow Google to use or share our analytics data.
Google Analytics cookies expire 38 months after your last visit to this site. Full details on the cookies set by Google Analytics are published on the Google website. Google also publishes a browser add-on, to allow you to choose that information about your website visit is not sent to Google Analytics.
JSESSIONID is a cookie used for controlling and recognising your secure login session, this expires when you log out or leave the site.
How to control and delete cookies
However, if you wish to restrict or block the cookies which are set by our websites, or indeed any other website, you can do this through your browser settings. The ‘Help’ function within your browser should tell you how.
Alternatively, you may wish to visit www.aboutcookies.org which contains comprehensive information on how to do this on a wide variety of browsers. You will also find details on how to delete cookies from your machine as well as more general information about cookies.
Please be aware that restricting cookies may impact on the functionality of our website.
If you wish to view your cookie code, just click on a cookie to open it. You will see a short string of text and numbers. The numbers are your identification card, which can only be seen by the server that gave you the cookie.
To opt-out of third-parties collecting any data regarding your interaction on our website, please refer to their websites for further information.