LeDeR privacy notice
LeDeR is a service improvement initiative commissioned by NHS England. Local areas review deaths of people with a learning disability and autistic people in order to improve the standard and quality of care provided. NHS England controls the data gathered.
Why does LeDeR need to use personal details?
LeDeR needs to know the personal details of people with a learning disability who have died so that their deaths can be reviewed. We may have to gather information from a number of different services, so we need to make sure that we are collecting information about the right person. We cannot review deaths anonymously because people with a learning disability and autistic people are often in touch with several different services (primary and secondary healthcare, physiotherapy, speech and language therapy, community learning disabilities team, care providers etc.) and without identifying them carefully we could review the same person more than once, or mismatch information about people with similar profiles.
LeDeR requires information about the closest living relative, family member or close friend (name, contact details, relationship), in order to invite them to contribute their views to the review.
Getting personal details about people who have died
LeDeR can be told about the death of a person with a learning disability or an autistic person by anyone holding that information. This could be, for example, a health or care professional, a relative, a service manager or a friend. When we are told about a death, personal information about the person who has died will be collected. We will also receive information about the person who has died from health and/or care professionals who have been involved in supporting that person. The reviewer may ask them questions about the health and care of the person, their diagnosis and treatments, and the circumstances leading up to their death. The reviewer may also need to look in the person’s health or care records to check how their care was delivered.
What personal information does the LeDeR programme collect, and why?
The information that LeDeR collects about people with a learning disability and autistic people who have died includes:
- Personal details (this includes for example: name, date of birth, date of death, gender, ethnicity, postcode, NHS number). These details help to identify the person who has died so that a local reviewer can trace their service contacts and conduct a review into their death.
- Information about the circumstances leading to the person’s death and the care they received in their life, that is held in health or social care records, in order to review the person’s care, assess best practice and identify where service improvements may be required.
- Information about the person’s closest living relative, family member or friend (name, contact details, relationship), in order to invite them to contribute to the review.
- Information about the person’s cause of death. We send the NHS number (or any other information that could identify the person, e.g., date of birth and date of death) to NHS England to process. NHS England link this to information about cause of death held by the Office for National Statistics and tell us what the person has died of.
What does LeDeR do with personal information it receives?
We use personal information to be able to conduct reviews into the lives and deaths of people with a learning disability and autistic people. The purpose of these reviews is to find out if there were any factors contributing to their deaths that could be changed for the better, and to offer suggestions for service improvements that may help avoid premature deaths in the future.
- We use the NHS number to link the information about people with a learning disability who have died to information about the person’s cause of death which is held by NHS England. This process uses the Data Linkage Service at NHS England. Patient identifiers are securely transferred to and from NHS England for linkage purposes.
- Once a LeDeR review has been completed, the review report is redacted before sharing. This means that we retain personal information within the LeDeR system for future reference for the length of the retention period stated in the DPIA (10 years), but that the version sent out to families, governance groups and health and care providers has personal details deleted (e.g. NHS number, date of birth, name of GP, names of family members contributing to the review).
The completed reviews are stored in a secure data storage facility. Circumstances under which we are allowed to share un redacted personal information include:
- Where there is an immediate and serious threat to the personal safety of a person.
- Where there is a legal requirement to disclose that information (e.g., if it is covered by health and safety legislation or under a court order where a crime has been committed).
- Where professional fitness to practice may be compromised.
Personal data is aggregated and used for service improvement purposes by Integrated Care Boards (ICBs) and NHS England via the LeDeR Data Tool and after analysis by our academic partner for inclusion in the LeDeR Annual Report. Use of the aggregated data in the LeDeR Data Tool is limited to LeDeR staff and analysts within NHS England and ICBs and data is not shared outside these organisations.
Who has access to the personal information of people with a learning disability who have died?
Local area contacts (LAC), senior reviewers and reviewers, who are professionals who have received training about the LeDeR process, conduct the reviews of the deaths of people with a learning disability. They will have access to the personal information of the person who has died so that they can do the review.
Some members of the LeDeR team coordinating the review process will also have access to the personal information so that they will be told when someone has died, tell the relevant LAC and reviewer, check the completeness of the review, and then anonymise it. The name and contact details of the LACs, senior reviewers and reviewers are shared within LeDeR for this purpose.
NHS England will receive the NHS numbers of people who have died in order to categorise the person’s death in line with standard categories.
What is the legal basis for LeDeR to use information?
Use of the data for the purposes detailed in this notice is approved under Section 251 of the NHS Act 2006.
This is also the legal basis for processing contact details of family, next of kin, friends. Articles 6(1)(e), 9(2)(g) and 9(2)i of UK GDPR apply.
How long is personal information stored for?
Once a review of a death is complete, the documentation is stored for 10 years, to enable learning points from the case reviews.
Where it is found that a person whose death has been notified to LeDeR did not have a learning disability and was not autistic, their data is stored for 1 year to enable multiple checks to confirm their status. Only system administrators working for LeDeR are able to access their data during this period.
National Data Opt Out
The National Data Opt Out scheme allows people to opt out of having their personal information shared for purposes other than the direct provision of their care and treatment. If a person has registered their wish to opt out in this way before their death, we will not carry out a LeDeR review.
Information rights of people involved with LeDeR
Right to be informed
Any living person whose personal information is used by LeDeR (e.g., the closest living relative of a deceased person) has the right to be informed about the collection and the use of their personal data. This privacy notice confirms the information that LeDeR uses.
Right of access
Any living person whose personal information is used by LeDeR (e.g., the closest living relative of a deceased person) has the right to obtain a copy of personal data that we hold about you https://ico.org.uk/your-data-matters/
Right to rectification
You have the right to ask us to rectify any inaccurate data that we hold about you.
Right to erasure (‘right to be forgotten’)
Any living person whose personal information is used by LeDeR (e.g., the closest living relative of a deceased person) has the right to request that we erase personal data about you that we hold. This is not an absolute right and depends on the legal basis that applies, or we may have overriding legitimate grounds to continue to process the data.
Right to restriction of processing
Any living person whose personal information is used by LeDeR (e.g., the closest living relative of a deceased person) has the right to request that we restrict processing of personal data about you that we hold. You can ask us to do this for example where you contest the accuracy of the data.
Right to data portability
This right does not apply to information processed by LeDeR .
Right to object
Any living person whose personal information is used by LeDeR (e.g., the closest living relative of a deceased person) has the right to object to processing of personal data about you on grounds relating to your particular situation. The right is not absolute, and we may continue to use the data if we can demonstrate compelling legitimate grounds.
Rights in relation to automated individual decision-making including profiling.
Any living person whose personal information is used by LeDeR (e.g., closest living relative of a deceased person) has the right to object to being subject to a decision based solely on automated processing, including profiling. Should we perform any automated decision-making, we will record this in our privacy notice, and ensure that you have an opportunity to request that the decision involves personal consideration. LeDeR does not carry out profiling and does not use data in this way.
Right to complain to the Information Commissioner
Any living person whose personal information is used by LeDeR (e.g., the closest living relative of a deceased person) has the right to complain to the Information Commissioner if you are not happy with any aspect of the processing of personal data or believe that we are not meeting our responsibilities as a data controller. The contact details for the information commissioner are:
Information Commissioner’s Office
For more information about LeDeR or to access your own personal information please contact the LeDeR team at
NHS England’s Data Protection Officer is:
Head of Corporate Information Governance and Data Protection Officer
Transformation & Corporate Operations Directorate
NHS England and NHS Improvement