Purposes of processing

A Health Needs Assessment (HNA) was commissioned by NHS England’s National Healthcare Inequalities Improvement Programme. Dr Dianne Addei, (Senior Public Health Adviser) with the Sickle Cell Disease and Thalassemia Healthcare Pathway Improvement Steering Group will use the findings and recommendations of this HNA (late November 2024) to inform and support decisions development and commissioning of services.

HNA will:

• Describe the thalassemia patient cohort – how many thalassemia patients there are in England and their breakdown by age group, sex, ethnic group and level of deprivation (Index of Multiple Deprivation).
• Understand the number of patients according to the type of thalassemia.
• Understand where these patients are being treated, including illustrating how many live near specialist care centers and how many are further away.
• Understand aspects of their care, such as how many emergency admissions they have had.
• Understand how many and what types of comorbidities patients have.
• Understand their age (in age ranges) at diagnosis and, where relevant, age at death.

Data sources

National Hemoglobinopathy Registry (NHR) and Data Collections for Secondary Use Services (SUS) – More information about the NHR can be found here – NHR – Home

Categories of personal data

Personal, sensitive

Recipients of personal data

NHS England

Legal basis for processing

GDPR 6(1)(c), 6(1)(e) and 9(2)(h)

Types of data processed and categories of data

Personal data

Personal data that are:

• Directly identifiable data

will be processed for the above purposes in relation to thalassemia patients.

The data that is processed by this Product may include about:

• name
• date of birth
• the first part of the postal code
• gender
• NHS number and/or hospital registration number
• health information, including information about your symptoms, medical conditions, diagnosis and treatment
• race or ethnicity

Legal grounds for processing personal data

Processing of personal data

The NHS Trust’s processing of personal data using the NHR Register for the purposes identified above is to provide care to individuals. These data are kept in the National Registry of Hemoglobinopathies.

This is permitted under the following UK GDPR legal grounds:

UK GDPR

Public duty – The article 6 paragraph (1) letter (e) “…necessary for the performance of a task carried out in the public interest or in the exercise of public authority…”.

Health – Article 9 paragraph (2) letter (h) “necessary for the purposes of preventive or occupational medicine for the assessment of the employee’s capacity for work, medical diagnosis, the provision of medical or social assistance or treatment or the management of health or social assistance systems and services…” and in accordance with paragraph 2 of Part 1 of the Data Protection Act 2018

Confidential data

Personal data processed for the above purposes are also confidential data.

As the NHS Trust processes your confidential data to provide you with individual care, it relies on your implied consent.

Who processes your personal data on behalf of the operator

NHS England Arden and GEM CSU collect data from the National Hemoglobinopathy Register to de-identify it for analytical purposes.

Who your data is shared with

Other organizations

Personal data will not be shared with any other organization

The health needs assessment will not contain personal data relating to individual patients. The outcome of the review will be shared with the Sickle cell Disease and Thalassemia Healthcare Pathway Improvement Steering Group

Your rights under the UKGDP

The following rights under the UK GDPR apply to the processing of your personal data for the above purposes:

• The right to be informed
• Right of access
• The right to rectification
• The right to object

Other waivers

The national data opt-out does not apply to the processing activities described below:

• the collection, de-identification and analysis of data by NHS England to create the health needs assessment was carried out under a legal obligation (Legal Instructions) and therefore the national data opt-out does not apply in relation to this processing activity.
• the data to be shared with other organizations is not confidential patient information and therefore the national data opt-out does not apply.

If there is a separate request for data that does not fall within the above processing activities, the application of the national data opt-out will be assessed and applied where appropriate.