LeDeR privacy notice
LeDeR is a service improvement initiative commissioned by NHS England. We review the deaths of people with a learning disability and/or autism to improve standards and the quality of care for people who use, or may use, these services. NHS England are controllers and therefore are responsible for the data we gather.
Why LeDeR needs to use personal details?
We need to know the personal details (e.g Name, DoB, NHS Number)of people with a learning disability and/or autism so we can review their death. We gather information about people who knew the person well. We do this to make sure we are collecting information about the right person. People with a learning disability usually have different services including:
- primary and secondary healthcare
- speech and language therapy
- community learning disabilities team
- mental health community services
- care providers
We identify them carefully to avoid reviewing the person more than once. We also do this to avoid mismatching information about people with similar profiles.
Getting personal details about people who have died
Anyone can tell LeDeR about the death of a person with a learning disability and/or autism. For example:
- a health or care professional
- a relative
- a service manager
- another person with a learning disability and / or autism
We will collect personal information about the person when you report their death, unless the individual had opted out of their care records being used for purposes beyond their direct care. Health or care professionals will also tell us about the person who died. The reviewer may ask questions about the health and care of the person. For example, their diagnosis and treatments and the circumstances of their death. The reviewer may also need to look in the person’s health or care records to check how their care was delivered.
Personal information the LeDeR programme collects, and why
Information LeDeR collects about people with a learning disability and/or autism who have died includes:
- personal details, for example, gender, ethnicity, postcode and NHS number. This helps to identify the person who died. It allows a local reviewer to trace their service contacts and conduct a review of their death
- health and social care records about the person who died and the care they received. This allows for a review of the person’s care, assess best practice and areas for improvements
- information about the person’s relative or next of kin. For example, their name, contact details and relationship. We will invite them to contribute to the review
What LeDeR does with personal information it receives
We use the personal information of people with a learning disability and/or autism to review their life and death. This allows us to identify any modifiable factors about their deaths. We can then suggest service improvements that will help avoid premature deaths.
We transfer patient identifiers securely to and from NHS England for linkage purposes. We remove information that identifies individuals on the review report when completed. This means that we keep any essential information to investigate service improvements. For example, the name of the person or the name of any agencies providing care. But we delete any information that identifies the person who died, or people mentioned in the review. For example, their NHS number, date of birth, name of GP, names of family members contributing to the review.
We store the completed and redacted reviews in a secure data storage facility. Circumstances under which we share unredacted personal information include:
- an immediate and serious threat to the personal safety of a person
- a legal requirement to disclose that information. For example, a crime committed or covered by health and safety legislation
- compromised professional fitness to practice
Access to personal information of people with a learning disability and/or autism who have died
Care professionals who can access personal information of people with a learning disability and/or autism who have died include:
- Local area contacts (LAC)
- senior reviewers trained to use the LeDeR process
- reviewers trained to use the LeDeR process
- some members of the LeDeR team coordinating the review process
We will share the name and contact details of the LACs, senior reviewers and reviewers in LeDeR.
NHS England will receive the NHS numbers of people who have died to categorise the person’s death in line with standard categories.
Why LeDeR programme can legally use information
Under section 251 of the NHS Act 2006, we can use the data for the purposes detailed in this notice. This is also the legal basis for processing contact details of family, next of kin and friends. Articles 6,1(e) and 9,2(i) of UK GDPR apply. to the use of data for staff, living relatives, next of kin and, or friends.
How long LeDeR can store personal information
Once a review of a death is complete, we can store the redacted documentation for 5 years. This allows us to learn from the case reviews. During this period, access to the records of the deceased person may be requested by those with a legal right to access the records under the Access to Health Records Act 1990 (note – the UK General Data Protection Regulation and Data Protection Act 2018 do not apply to the data of people that are deceased).
Information rights of people involved with LeDeR
Right to rectification’
Any living person including the next of kin of the deceased person have the right to ask us to rectify any factually incorrect data that we hold. We may not rectify the information if it is a professional opinion. But retain it through a record of concerns. If we change the information, we will retain it for audit purposes.
Right to erasure
Any living person including the next of kin of the deceased person has the right to request that we erase personal data about them that we hold. This is not an absolute right and depends on the legal basis that applies. We may have overriding legitimate grounds to continue to process the data.
Right to restriction of processing
Any living person including the next of kin of the deceased person has the right to request that we restrict the processing of their personal data. You can ask us to do this for example, if 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 including the next of kin of the deceased person has the right to object to us processing data about them. The right is not absolute. We may have overriding legitimate grounds to continue to process the data
Rights related to automated decision making
This right does not apply to information processed by LeDeR.
Head of Corporate Information Governance and Data Protection Officer
Transformation & Corporate Operations Directorate
Right to complain to the information commissioner
Any living person has the right to complain to the information commissioner if they are not happy with the processing of their personal data. They can also complain if they believe we are not meeting our responsibilities as a data controller.
Information Commissioner’s Office