Version 0.4 22.10.18

Our approach to managing your information

We want to make it easy for volunteers to manage their information. We recognise that people’s needs and preferences may change over time, and we want you to be able to manage your account so that you get the right level of information and contact from Join Dementia Research.

We have a variety of options available to people registered with Join Dementia Research:

1) You can change which communications you receive:

a) General updates and newsletters – You can opt in to receive newsletters and other general updates or mailings from us. You can opt out at any time by simply clicking ‘unsubscribe’ at the bottom of any of these emails, or log in to your account to change the answer to the question “Would the volunteer like to receive regular updates and information from Join Dementia Research by email (e.g. newsletters)?”

b) Study alerts – You can opt in to receive email alerts about new studies you match to. You can choose not to receive these emails at any time, but still be matched to studies. You can log into your account to view your study matches if you want to.

c) Contact with study teams – You can also change your preferred method for researchers to get in touch with you. We have a step-by-step guide to changing your email preferences.

2) You can ask for a note to be added to your account, stating that you do not wish to participate in further studies for a period of time.

3) You can ask to be removed from the service at any time. This will remove all the personal information from your account permanently. More information is provided below.

What can I do if I feel being on Join Dementia Research is getting too much?

We recognise that mailings, emails, calls and other contacts can be burdensome and can cause stress and anxiety, particularly for some people with advancing dementia or who may be caring for a loved one.

There are options to reduce the number of contacts, while remaining available to participate in research.

  • The first step we suggest is to unsubscribe from mailings from Join Dementia Research, and also to opt out of receiving email alerts informing you that you have matched to studies. You can find out how to do this yourself above, or, if you prefer, our charity help desks would be happy to make these changes to your account for you.
  • You can also ask for a note to be added to your account, stating that you do not wish to participate in further studies for a period of time.
  • You can also ask for your account to be deleted, although this is a more radical option and is a permanent step.

What happens when I ask for my personal information in my Join Dementia Research account to be deleted?

When a volunteer/user account is deleted from the Join Dementia Research website, this account and all the information recorded in it (e.g. personal data, healthcare data, and comments) is permanently removed from the Join Dementia Research database.

This means that no registered clinician or researcher user accessing Join Dementia Research can see your information. You will no longer be able to access your account and will not be contacted or matched to research studies.

Despite the deletion of a user account, an audit log retains a record of your previous web history. This is to ensure that we can trace back all changes made to any account, and use anonymised information to improve the website. Access to the audit log is restricted to those managing Join Dementia Research and a record of all investigations is maintained.

Information in the audit log cannot be used to create another account. Where a volunteer participates in a study, their information will be held by that study team, and will be kept in accordance with the relevant legislation.

We will also keep an anonymised tally of your research participation. This will record how many people have participated in research as a result of being part of Join Dementia Research.

Will you accept a request to close my account and delete my data from someone who isn’t me?

If a researcher or family member requests that we delete someone’s account from Join Dementia Research, we will contact the volunteer by their prefered method of communication to check that they are happy for us to delete the account. Unless the volunteer lets us know that they do not want their account to be deleted, we will delete their account two weeks after we have contacted the volunteer.

If we receive a request from someone with Lasting Power of Attorney on health and welfare grounds (in England or Wales) or Welfare Power of Attorney (in Scotland) to delete an account without notifying the volunteer, we will do so. We will take requests to change the communication preferences (such as unsubscribing from the newsletter) from people who are not the volunteer. We will take deletion requests from family members or representatives of volunteers who have died.

Where will my data be stored?

Your data will be stored on the Join Dementia Research website, or if you registered using the paper registration forms, it will be stored in both the Join Dementia Research website and the Alzheimer’s Research UK offices.

Will my personal data be passed on to other third parties?

Your information is managed by a team of staff based at the NIHR CRNCC. Only the Join Dementia Research staff at NIHR or organisations working on our behalf, approved researchers, NHS staff and the charity help desks registered to use Join Dementia Research will be able to see your information. We pass basic information to NHS Digital on a regular basis to check with them whether any of our registrants have passed away, and therefore should no longer be contacted.

Approved researchers may be employed by the NHS, commercial organisations or universities, pursuing activities for medical benefit. All researchers are assessed and approved on the basis that their employers are signed up to our terms and conditions, and data sharing agreements; and that they are working on ethically approved studies.

Researchers only access your information on Join Dementia Research in relation to studies that you match to.

A list of research organisations approved to use Join Dementia Research is available on our website, in our ‘Any questions?’ section.

The information can be found under the question ‘Who can see my information in Join Dementia Research?’. Alternatively please call one of our partner charity helplines and they can request that this information is sent to you by post.

If my account and information is deleted from the Join Dementia Research website, is there anywhere else my information might still be stored?

The audit log used by Join Dementia Research is designed to capture all actions, including when it is created or deleted. This log is not affected by the deletion action.

When your account is deleted from the system, your profile no longer exists within the part of the system you or a researcher/help desk has access to. You will no longer appear in searches.

If you have visited the Join Dementia Research website, we may have collected anonymous information about you using small information files called ‘Cookies’. You can read more about these and how you can change whether or not we collect this information in our Cookie Policy.

What happens after a volunteer dies?

When registering with Join Dementia Research all volunteers and representatives are asked to provide their consent for their information to be updated by Join Dementia Research if a person dies.

If we receive notification from a member of the volunteer’s family or a researcher that an individual has died we will update the record as soon as possible. 

We also contact NHS Digital approximately twice a year to identify volunteers from England, Wales and Scotland who have now died. We share basic personal information about volunteers with NHS Digital so they can screen their records for deaths.

When we become aware that a volunteer has died, we note their research participation and keep an anonymous record of this, and then delete their record as above. We recognise that contacting a person who has died can be distressing for loved ones and we will respond to anyone notifying us of a death with a prompt account deletion.

If we are not notified of a person passing away by the processes described above, the volunteer’s record, and that of any associated representative, may be retained. 

What happens to the information relating to my next of kin and/or carer when my account has been deleted?

When an account is deleted, the entire volunteer record (including any other information about a carer/next of kin) is also deleted.

What happens to my information when I ask for my account to be deleted?

All your personal information will be deleted. This applies to both your account information, which includes your username and security information, and the your volunteer information, which is used to match you to studies. Some demographic data is held for auditing purposes, such as diagnosis and ethnicity, but this is anonymised and cannot be linked to you.

What happens to the information of other volunteers I registered when my account has been deleted?

All information we hold on volunteers who you registered on their behalf will be deleted.

However, if that person would like to continue to volunteer you should let us know when you request for us to delete your account. It is possible for us to leave their volunteer record active. Their volunteer information can then be linked to another account or left for the person to manage themselves, online or via our charity telephone helplines.

What happens after a volunteer dies and their carer wants to remain on Join Dementia Research?

We would be very pleased for carers, representatives or family members to join the register as volunteers themselves. Please contact the helpdesk or complete a new registration to keep up your contact.

What happens if I have recently been contacted by a researcher and I choose to delete my account?

If you have recently been contacted by a researcher or had a status update within the recruitment matching list (indicated on the system that you have been approached about a study, enrolled onto a study etc.) on your ‘Volunteer Summary’ page, your account will disappear from the researcher’s list without notice to the researcher or recruiter. This status will still be present in the audit log.

What is the audit log?

The audit log captures those actions within the database such as unsuccessful login attempts, when an account was accessed and when account information was changed – either by the representative or volunteer or by a member of the helpdesk, researcher, or a clinician. These audit logs are kept for investigatory purposes to ensure that only the right individuals are accessing the right accounts.