Learning Disabilities Data: GDPR information

The Secretary of State for Health and Social Care, on behalf of DHSC, has directed NHS England to collect and analyse data in connection with the Learning Disabilities Observatories GPES Extract Data Collection Directions 2018 (hereafter referred to as ‘the LDD Directions’). A Data Provision Notice has been served on general practices mandating the provision of the required data to support this service.

From August 2020 the collection has been known as the Learning Disabilities Data Extract (LDD). This is because the Learning Disabilities Observatory was removed as an organisation of Public Health England (PHE); the LDD programme of work transferred to NHS England. 

The LDD aims to:

• make information about the health and healthcare of people with learning disabilities more readily available and understandable
• undertake detailed secondary analyses of existing datasets to identify important new lessons for service improvement and development
• knowledge share by working to ensure that key messages about best practice in providing healthcare for people with learning disabilities are widely understood
• improve available information by surveying data gaps and working to fill them

The data is used to support the production primary care indicators regarding care quality for people with a learning disability. These indicators cover the following areas:

• mental health condition (such as ADHD or autism)
• demography (such as ethnicity)
• health promotion
• Body Mass Index (BMI)
• uptake of screening tests (such as cervical cancer screening)
• prevalence of key gastrointestinal disorders, gastric oesophageal reflux disease (GORD), dysphagia and constipation)
• prevalence of common diseases (such as asthma, cancer and diabetes)
• management and outcomes of some key health conditions (such as diabetes and epilepsy)
• appropriate prescribing of antidepressant and antipsychotic medication

NHS England does not extract any patient-level data. NHS England receives data aggregated at general practice level. The published data is further aggregated at sub-ICB level and reported against indicators, in most cases split by age, gender and ethnicity categories.

None

• Be informed
  
• Get access to it
  
• Rectify or change it
  
• Erase or remove it
  
• Restrict or stop processing it
  
• Move, copy or transfer it
  
• Object to it being processed or used
  
• Know if a decision was made by a computer rather than a person
  

Consent not the basis for processing

UK GDPR Article 6(1)(c) - processing is necessary for compliance with a legal obligation to which the controller is subject (by virtue of the Directions).

UK GDPR Article 9(2)(g) - reasons of substantial public interests, supplemented by Schedule 1, Part 2 of the Data Protection Act 2018 - 'statutory etc and government purposes'.

UK GDPR Article 9(2)(h) - management of health or social care systems and services, supplemented by Schedule 1, Part 1 of the Data Protection Act 2018 - 'health or social care purpose'.

NHS England has the legal permission to collect these data under Section 254 of the Health and Social Care Act 2012.