NHS Digital Data Release Register - reformatted

National Institute for Health Research

Opt outs honoured: No - consent provided by participants of research study (Consent (Reasonable Expectation))

Sensitive: Non Sensitive, and Sensitive

When: 2016/04 (or before) — 2019/09.

Repeats: Ongoing, One-Off

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(2)(c), Informed Patient consent to permit the receipt, processing and release of data by NHS Digital, Health and Social Care Act 2012 – s261(7)

Categories: Identifiable


  • MRIS - List Cleaning Report


The ‘Join dementia research’ register is a national service funded by the Department of Health; it enables members of the public to register to be contacted about potential research studies. In registering they consent for their information to be available to the dementia research community The link requested to HSCIC information will ensure people who are deceased are removed from the Department of Health (DOH) letter states that the ‘delegation will run up until September 2015’the ‘register’ of potential research volunteers to ensure that no harm or distress is caused by contacting people who have died. The intention is to send HSCIC information on all volunteers from the register on a monthly or quarterly basis (depending on cost). The HSCIC will simply confirm if any of the volunteers have died by supplying fact of death. No updated demographics will be provided to University College London (UCL).

Yielded Benefits:

Using the NHS List Cleaning Product has yielded several benefits to several parties: • NIHR CRNCC has been able to remove several hundred deceased volunteers, enabling the Register to meet its required standards; • NIHR CRNCC is able to maintain the currency of the JDR Register; • NIHR CRNCC is able to prevent undue distress to JDR Registrants or their families by ensuring the research staff do not contact bereaved families; • NIHR CRNCC is able keep its promise to JDR Registrants and/or their families by ensuring the Registrant’s details are removed from the Register upon death; • The currency of the Register fosters trust between individuals and encourages participants to sign up; • Increased numbers signing up to the Register increases the likelihood of the JDR system being able to meet the PM challenge. The JDR Register ensures a steady supply of research participants to research studies for which they may have been matched. This increases the level of research into dementia, the potential for improving treatments for those with dementia and the likelihood of finding a cure for this terrible disease. • Nearly 40,000 volunteers have signed up to JDR to be contacted about Research opportunities, from these over 11,000 volunteers have been enrolled into research studies. JDR has been used on over 330 research studies in over 250 NHS, University and commercial sites. Data that has been supplied/will continue to be supplied from NHS Digital will not be used in support af a particular PhD or post graduate research study.

Expected Benefits:

The benefits are that ‘Join Dementia Research’ will be able to process data fairly without unintentionally breaching the undertaking given to volunteers that their identifiable information will be removed from the register after their deaths and a reduction in the risk of causing distress by attempting to contact members of the cohort that have deceased. The following information provides background on ‘Join Dementia Research’: The service has been running since July 2014, and was nationally launched in February 2015. The benefits described are already being recognized, but they will increase over the next 2-3 years and the register grows. Benefits of the register - ‘Join dementia research’ has been funded by the Department of Health and is delivered in partnership with the National Institute for Health Research, Alzheimer Scotland, Alzheimer’s Research UK and the Alzheimer’s Society. Its development was prompted by the Prime Ministers Challenge on Dementia, and it’s purpose is to support the PM Challenge target to ensure 10% of all people with dementia are involved in dementia research. The benefit of this being that: a. The system enables everyone in the country aged over 18 has an opportunity to express an interest in being involved in research. b. All dementia research studies taking place in the UK (funded by government, NIHR, charities and commercial organizations) with ethical approval can use the system. Providing a new and improved way of identifying and recruiting volunteers into vitally important dementia research studies. c. The traditional way of recruiting dementia research volunteers, in through NHS memory clinics. This method takes time, as researchers wait for suitable subjects to come through clinic. Join dementia research removes this barrier, by having volunteers ready and waiting to join studies. All dementia research studies will recruit more quickly, saving time and money. Currently over 70% of research studies exceed recruitment target times, this system will speed up those times. d. As a result of studies being concluded more quickly, we can ensure that the findings of those studies can be acted upon and implemented or considered for the benefit of patients and the public. The service will also help ensure that studies funded and delivered across the world could be attracted to take place in the UK. e. The studies look at prevention, diagnosis, treatment, care and potentially cures for people living with dementia. f. Over the next 12-18 months we expect the service to have attracted 100,000 volunteers and to become the main mechanism by which researchers find study volunteers. g. The system is already supporting recruitment to 29 studies (over half of all studies on the NIHR CRN portfolio) and has recruited 219 (over 10%) of all participants into research studies which as the PROTECT study at Kings College, an important study which gathers data to support innovative research to improve our understanding of the ageing brain and why people develop dementia, and EXPEDITION 3 and Eli Lilly study which is testing a new medication for people with mild early dementia symptoms. h. The service was nationally launched in February, it was announced in the media and here is a link to the press release with comments from Secretary of State for Health and Chief Medical Officer http://news.joindementiaresearch.nihr.ac.uk/press-pack-toolkit/ i. It will contribute to delivery of the Prime Minister Challenge on Dementia target of having 10% of all people with dementia involved in research. www.joindementiaresearch.nihr.ac.uk


The link to HSCIC will lead to the removal of records of deceased patients from the register which enables ‘Join Dementia Research’ to comply with the following undertaking from the consent forms used when recruiting patients: “I understand that if I withdraw, or after my death, then all identifiable information will be removed from ‘Join dementia research’.” The timely removal of deceased patients records will reduce the chances of contacting people who are deceased. The register will be updated at least quarterly and possibly more frequently.


University College London Hospitals NHS Foundation Trust (UCLH) will periodically provide HSCIC with lists of identifying details of patients from the register. The lists will include name, date of birth, NHS number, postcode and gender Using its List Cleaning service, the HSCIC will confirm which patients are deceased. The information is then used to remove deceased patients from the register. Once the deceased patients have been removed from the register, the data supplied by the HSCIC will be permanently deleted. The data provided by HSCIC will not be shared, or processed by any third party and no third party can access records of patients deleted from the register to identify which were reported as deceased by the HSCIC.