Purposes for processing

A Health Needs Assessment (HNA) has been commissioned by the NHS England, National Healthcare Inequalities Improvement Programme.  Dr. Dianne Addei, (Senior Public Health Advisor) together with the Sickle Cell Disease & Thalassemia Healthcare Pathway Improvement Steering Group, will use the findings and recommendations of this HNA (due end November 2024) to inform and underpin service development and commissioning decisions.

The HNA will:

• Describe the cohort of Thalassemia patients – how many thalassemia patients there are in England, and their breakdown by age group, sex, ethnic group and deprivation level (Index of Multiple Deprivation).
• Understand the numbers of patients by type of thalassemia.
• Understand where these patients are being treated, including illustrating how many live close to specialist centres of care and how many are more distant.
• Understand aspects of their care such as how many emergency admissions they have had.
• Understand how many and what type of co-morbidities patients have.
• Understand their ages (in age bands) at diagnosis, and in relevant cases, ages at death.

Sources of the data

National Haemoglobinopathy Registry (NHR) and Secondary Use Services Data Collections (SUS) – Further information on 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 which is:

• Directly Identifiable Data

will be processed for the purposes above about patients with Thalassemia.

Data that is processed by this Product may include about an individual’s:

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

Legal grounds for processing personal data

Processing personal data

The processing of personal data by the NHS Trust using the NHR Registry for the purposes identified above is to provide individuals with care. This data is held within the National Haemoglobinopathy Registry.

This is permitted under the following legal grounds in UK GDPR:

UK GDPR

Public Task – Article 6(1)(e) ‘…necessary for the performance of a task carried out in the public interest or in the exercise of official authority…’.

Health Care – Article 9(2)(h) ‘necessary for the purposes of preventative or occupational medicine for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services…”   and under Paragraph 2 of Part 1 of the Data Protection Act 2018

Confidential Data

The Personal Data processed for the purposes above is also Confidential Data.

As the NHS Trust are processing your Confidential Data to provide you with individual care, they are relying on your implied consent.

Who is Processing your Personal Data on behalf of the Controller

NHS England Arden and GEM CSU collect the data from the National Haemoglobinopathy Registry in order to de-identify it for analytical purposes.

Who your data is shared with

Other organisations

Personal data will not be shared with any other organisations

The Health Needs Assessment will not contain any personal data relating to individual patients.  The outcome of the analysis will be shared with the Sickle Cell Disease & Thalassemia Healthcare Pathway Improvement Steering Group

Your rights under UKGDP

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

• Right to be informed
• Right of access
• Right to rectify
• Right to object

Other Opt Outs

The National Data Opt Out does not apply to the processing activities outlined as shown below:

• the collection, de-identification and analysis of data by NHS England to create the Health Needs Assessment has been carried out under a legal obligation (the Legal Directions) and therefore the National Data Opt Out does not apply in relation to this processing activity.
• the data to be shared with other organisations is no confidential patient information and therefore the National Data Opt Out does not apply.

If there is a separate request for data which falls outside of the above processing activities, the application of the National Data Opt Out will be assessed and applied where applicable.