NHS Digital Data Release Register - reformatted

Public Health England (PHE)

🚩 Public Health England (PHE) received multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Public Health England (PHE) may not have compared the two datasets, but the identifiers are consistent between datasets for the same recipient, and NHS Digital does not know what their recipients actually do.

Project 1 — PHECancerReg

Opt outs honoured: No - not applicable for this dataset, No - flow to PHE under a memorandum of understanding, No - consent provided by participants of research study

Sensitive: Sensitive

When: 2016/09 — 2020/02.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Informed Patient consent to permit the receipt, processing and release of data by NHS Digital

Categories: Identifiable

Datasets:

  • Cancer Registry linked to Diagnostic Imaging Dataset

Objectives:

To extend the information available for a cancer pathway, by linking data to Cancer Registry information


Project 2 — NIC-154590-YG6QH

Opt outs honoured: No - not applicable for this dataset, No - flow to PHE under a memorandum of understanding

Sensitive: Sensitive

When: 2017/09 — 2020/02.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Identifiable

Datasets:

  • Patient level data relating to Diabetic Retinopathy Eye Screening FOR DIRECT CARE

Objectives:

Objective for processing: The diabetic retinopathy screening program will use:• the demographic patient information transferred to invite people recently-diagnosed with diabetes for annual screening;• the relevant clinical information transferred about patients who attend clinic appointments so that appropriate patient care is provided to those patients;Processing activities:For each monthly cohort, all patients with diabetes codes (Diabetes Exclusions CST, Diabetes Resolved CST and Diabetes CST) will be identified by the HSCIC and only those who have 'Diabetes CST' as their latest code will then have demographic and clinical data extracted for them. The full list of all required demographic data will be extracted by the HSCIC alongside the latest diabetes code including the date and time of this record.The Data Provider Output (DPO) is the data that general practice system suppliers extract from general practice clinical systems and submit to the HSCIC. The DPO is based on the data extraction specification (referred to as the ‘Extraction Requirement’) that the HSCIC circulates to general practice system suppliers.There will be a small amount of data transformation performed on the DPO. The HSCIC will use the General Practice Extraction Tool - Query (GPET-Q) system to collate the general practices’ DPO data into a file and then send the resulting file to the HSCIC Data Management Environment (DME). This is the 'Full Cohort' extract.Two data attributes (NHS Number and Registered Practice Id) will be copied from the file into a further file which will be stored in the HSCIC DME. This is the 'Missing Patients' extract. It identifies the patients with diabetes extracted in the previous month’s extraction run, and the practices at which those patients were registered. Each month the HSCIC will replace the file with a new file of patient identifiers. Without that information it would be possible to send out confidential invitation letters inappropriately (e.g. to a person who has died, to the wrong address), potentially “lose” people in need of diabetic retinopathy services, and/or spend time and money investigating the "missing patients".The 'Missing Patients' and 'Full Cohort' extracts are the two data extracts that form the output files. The HSCIC processes and places the output files in a secure repository for Quicksilva (data processor for the 72 NHS diabetic retinopathy screening programmes) to download. The HSCIC retains the list of NHS numbers and GP practices until the next extract for the purpose of identifying the patients missing between months. This list will be destroyed once approved data about the missing patients has been extracted and sent to the 72 NHS diabetic retinopathy screening programmes. The data received will be stored within the central database of patient records maintained by the NHS diabetic retinopathy screening programme and used for the purposes described above.The screening database of patient records is maintained in data centres in Harrogate & London which are provided by Redcentric PLC (Redcentric PLC is certified in ISO27001, ISO9001 and NHS IG Toolkit 12 (commercial third party)). Quicksilva manage and operate the screening database and process the data to the requirements of the Public Health England. After processing activities, the data is sent using a N3 host to the 72 NHS diabetic retinopathy screening programmes dedicated systems located within secure care provider network environments (e.g. NHS trusts) and also sent to data reconciliation tools which updates patient demographic data with local clinical system data.In order that the right people get access to the right data, the screening database includes:• a mapping of the patient’s general practice to a local screening program;• role based access controls that limit what patient data can be accessed depending on a specific role;• and audit trails to detect any unauthorised and/or excessive access.In addition to the data provided to PHE, two data attributes (NHS Number and Practice) will be stored in the HSCIC DME to be used in future extractions Specific outputs expected, including target date:The data will be used on an ongoing basis within patient records maintained by the NHS diabetic retinopathy screening programme to invite patients for screening, and to enable clinicians to provide appropriate clinical care. This database will be updated monthly.Expected measurable benefits to health and/or social care including target date:See “03_GP2DRS - Benefits Plan - August 2013 (NIC-154590-YG6QH)”


Project 3 — HDIS_Public Health England (PHE)

Opt outs honoured: N

Sensitive: Non Sensitive

When: 2016/04 (or before) — 2016/08.

Repeats: Ongoing

Legal basis: Health and Social Care Act 2012

Categories: Anonymised - ICO code compliant

Datasets:

  • Access to HES Data Interrogation system

Objectives:

The HES (Hospital Episode Statistics) Data Interrogation System (HDIS) allows users to securely access HES, interrogate the data, perform aggregations, statistical analysis, and produce a range of different outputs. Access to HDIS is only provided to organisations who work within the public sector with a specific interest in public health. There is a strict information governance applications process in place to protect and control how the data is managed.


Project 4 — DARS-NIC-343380-H5Q9K

Opt outs honoured: Y, No - data flow is not identifiable, No - consent provided by participants of research studYes - patient objections upheld, No - flow to PHE under a memorandum of understanding (Section 251, Mixed, Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006)

Sensitive: Sensitive, and Non Sensitive

When: 2017/09 — 2020/02.

Repeats: Ongoing, One-Off, System Access

Legal basis: Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(7)

Categories: Identifiable, Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Critical Care
  • Hospital Episode Statistics Outpatients
  • Standard Monthly Extract : SUS PbR A&E
  • Standard Monthly Extract : SUS PbR APC Episodes
  • Standard Monthly Extract : SUS PbR APC Spells
  • Standard Monthly Extract : SUS PbR OP
  • Diagnostic Imaging Dataset
  • Mental Health Services Data Set
  • National Child Measurement Programme (NCMP)
  • Sexual and Reproductive Health Activity Data (SRHAD)
  • Cancer Registration Data
  • Bridge file: Hospital Episode Statistics to Mortality Data from the Office of National Statistics
  • Primary Care Mortality Database
  • ONS Births
  • Vital Statistics Service
  • Primary Care Mortality Data
  • HES:Civil Registration (Deaths) bridge
  • MRIS - Scottish NHS / Registration
  • Civil Registration - Deaths
  • Mental Health Minimum Data Set
  • MRIS - Bespoke
  • MSDS (Maternity Services Data Set)
  • Community Services Data Set
  • National Cancer Waiting Times Monitoring DataSet (CWT)
  • Emergency Care Data Set (ECDS)
  • National Diabetes Audit
  • Improving Access to Psychological Therapies Data Set

Objectives:

The DIDS data contains information on the diagnostic imaging tests, such as x-rays and MRI scans, carried out on cancer patients treated in NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE on the National Cancer Register (https://www.gov.uk/guidance/national-cancer-registration-and-analysis-service-ncras). PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis (such as DIDS), treatment and outcomes of these patients. The intelligence generated by cancer registration is used to improve the early detection and treatment of cancer, both by supporting direct patient care (for example, through genetic counselling services) and informing the commissioning and provision of improved diagnostic and treatment services.PHE is only provided with DIDS data for patients on the cancer register. PHE provides NHSD with a file containing NHS Number and the date of birth of cancer patients, which is then used to extract the relevant records from the DIDS system. This linked data is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan. The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. PHE has Section 251 support to collect information on all cases of cancer diagnosed in NHS hospitals in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these patients. The HES data linked to cancer registration records is used to produce a range of statistics and analyse trends in the incidence and prevalence of different cancers, and to understand how effective different treatments are in improving patient outcomes. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan.The patient identifiable HES data provided by NHSD to PHE is linked to a number of collections of information on patients with infectious diseases to monitor, investigate and manage: a)     antimicrobial resistanceb)    healthcare associated infectionsc)     respiratory diseasesd)    vaccine safetye)     vaccine efficacy and cost effectiveness. PHE is responsible for providing the national infrastructure for health protection including: an integrated surveillance system; specialist services such as diagnostic and reference microbiology; investigation and management of outbreaks of infectious diseases; ensuring effective emergency preparedness, resilience and response for health emergencies, including work on antimicrobial resistance; and evaluating the effectiveness of immunisation programmes and providing vaccines. HES is linked to laboratory data on antimicrobial resistance and healthcare associated infections to analyse the length of time affected patients spend in hospital and what their outcomes are in order to improve the way these threats to public health are managed. It is linked to laboratory data on infectious respiratory diseases to analyse the effectiveness of the treatments provided to patients. It is also linked to vaccination records to identify any health issues associated with new and existing vaccines, and to assess the efficacy and cost effectiveness of vaccines in preventing disease. The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake.The patient identifiable HES data provided by NHSD to PHE is linked to the records of individuals with a congenital anomaly or rare disease (CARD) held by PHE in the National Congenital Anomaly and Rare Diseases Register (https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs). PHE has Section 251 support to collect information on cases of CARDs in England and to link this to other sources of information on the diagnosis, treatment (such as HES) and outcomes of these individuals. This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report will be produced in 2017/18 and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network (http://www.eurocat-network.eu/). The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases.SUS data is essentially an earlier, less ‘clean’ version of the HES data described above (for example, not all duplicate records have been removed) and contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The identifiable patient data provided by NHSD to PHE is linked to the records of patients with cancer held by PHE in the National Cancer Register. Data is only provided by NHSD for patients with a cancer-related ICD-10 diagnosis code. This linked data is used for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics. The HES data contains information on the diagnosis and treatment of all patients admitted to or attending NHS hospitals in England. The anonymised data provided by NHSD to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of a wide range of conditions such as heart disease and stroke, mental health and respiratory disease. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies. The MHSDS contains information on the diagnosis and treatment of patients admitted to or attending NHS hospitals and treatment centres with mental health problems in England. The anonymised data provided by NHSD to PHE is used to produce a range of statistics and analyse trends in the incidence and prevalence of mental health problems such as dementia and depression and anxiety. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and by Local Authorities to provide mental health services at a local level. The NCMP provides information on the height and weight of all children in reception (aged 4-5 years) and year 6 (aged 10-11 years) in schools in England. PHE is the sponsor on behalf of the Secretary of State of the national collection of NCMP data by NHSD from all Local Authorities. The anonymised data provided by NHSD to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme. PHE also use the data to provide statistics to schools on the percentage of children who are an unhealthy weight.The NCMP findings are used by PHE to develop national policies to increase the proportion of children who are normal weight, and by Local Authorities to provide services that support families to make healthy lifestyle changes. The SRHAD collects information on the contraception, sexually transmitted infections (STI) and reproductive health advice and care provided to patients attending sexual and reproductive health (SRH) services in England. PHE is the sponsor on behalf of the Secretary of State for the national collection of SRHAD data by NHSD from all SRH services. The anonymised data provided by NHSD to PHE is used to monitor the implementation of key national sexual health policy objectives such as: increasing access to all methods of contraception, including long acting reversible contraception and emergency contraception, and reducing inequalities in access to services; reducing teenage conceptions; and reducing unintended pregnancies. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority sexual and reproductive health profiles at https://fingertips.phe.org.uk/profile/sexualhealth. The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

Yielded Benefits:

The PHE remit letter, dated March 2018, sets out PHE’s role across the health and care system, how PHE should perform that role, and the Government’s priorities of PHE from April 2018 to March 2019: https://www.gov.uk/government/publications/phe-remit-letter-2018-to-2019

Expected Benefits:

The benefits arising from PHE’s data processing are manifest in the improvements to population health and wellbeing across England. This includes: - making the public healthier and reducing differences between the health of different groups by promoting healthier lifestyles, advising government and supporting action by local government, the NHS and the public - improving the health of the whole population by sharing information and expertise, and identifying and preparing for future public health challenges - supporting local authorities and the NHS to plan and provide health and social care services such as immunisation and screening programmes, and to develop the public health system and its specialist workforce - researching, collecting and analysing data to improve understanding of public health challenges, and come up with answers to public health problems The PHE remit letter: 2017 to 2018 confirms the role the government expects PHE to play in the health and care system in 2017 to 2018: https://www.gov.uk/government/publications/phe-remit-letter-2017-to-2018

Outputs:

Diagnostic Imaging Dataset (DIDs) PURPOSE: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan. Hospital Episodes Statistics (HES) PURPOSE 1: (PHE National Cancer Register) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the CancerData website at www.cancerdata.nhs.uk. The findings derived from the cancer register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the National Cancer Strategy Implementation Plan. PURPOSE 2: (PHE Health protection work programme) The findings derived from the linked HES data primarily are used to inform the development and assess the effectiveness of clinical guidelines to improve the control of infections, the management of antimicrobial resistance and the treatment of respiratory diseases. The findings are also used to produce a range of indicators and reports such as the healthcare associated infections data at https://www.gov.uk/government/collections/healthcare-associated-infections-hcai-guidance-data-and-analysis and the vaccination information at https://www.gov.uk/government/collections/vaccine-uptake. PURPOSE 3: (PHE National Congenital Anomaly & Rare Diseases Register) This linked data is used to understand more about the incidence and prevalence of different CARDs in England, and about the treatment and outcomes of these individuals. A CARDS annual report is produced and prevalence statistics and prenatal detection rates are submitted to the European Surveillance of Congenital Anomalies (EUROCAT) network (http://www.eurocat-network.eu/). The findings derived from the CARDs register data are also used to inform the development and monitor the effectiveness of national policies and initiatives such as the UK Strategy for Rare Diseases. Linked HES & Civil Registry Deaths PURPOSE: (PHE End of life care work programme) The results of the analyses undertaken by PHE are published in the End of Life Care Profiles at https://fingertips.phe.org.uk/. These profiles are provided by Local Authority and Clinical Commissioning Group and are used to support local health and social care commissioning, for example by providing statistics on the place of death and nursing and care home bed rates. Primary Care Mortality Data Set (PCMD) PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of different public health profiles at https://fingertips.phe.org.uk/. PHE also undertakes ad hoc analyses of PCMD to support both the statutory health improvement duty of Local Authorities and their joint public health service commission responsibilities with Clinical Commissioning Groups (CCGs). These results of these analyses are provided directly to Local Authorities in the form of aggregate statistics and tables. Secondary Use Service (SUS) PURPOSE: (PHE National Cancer Register) The linked SUS and National Cancer Register data is used by PHE for the specific purpose of producing a set of monthly-updated cancer outcomes metrics on the performance of the NHS in diagnosing and treating cancer patients as soon as possible, such as cancer stage at diagnosis and the percentage of cases diagnosed as an emergency. These metrics, as well as other statistics based on the analysis of data from the cancer register, are published at http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/cancer_outcome_metrics. Health Survey for England PURPOSE: (PHE Healthy lifestyles work programme) The data which has been anonymised and provided to PHE is used to estimate excess calorie intakes for children and teenagers. The results of these analyses are providing the evidence for a national calorie reduction campaign led by PHE. Hospital Episode Statistics (HES) PURPOSE: (PHE Health improvement work programme and analytical support to Local Authority public health teams) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Public Health Outcomes Framework at http://www.phoutcomes.info/. The findings derived from HES data are used to inform the development and monitor the effectiveness of national policies and initiatives aimed at protecting and improving public health and reducing health inequalities. The HES data is also analysed by PHE to produce statistics to help Local Authorities fulfil their statutory duty to improve the health of their local population, for example through the production of joint strategic needs assessments and local health and wellbeing strategies. Mental Health Services Data Set (MHSDS) PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Common Mental Health Disorders Profiling Tool at https://fingertips.phe.org.uk/profile-group/mental-health/profile/common-mental-disorders. The findings derived from MHSDS are also used by PHE to develop and assess the effectiveness of national policies aimed at improving the lives of people with mental health problems, and are used by Local Authorities to support the commissioning and provision of mental health services at a local level. National Child Measurement Programme (NCMP) PURPOSE: (PHE Child health work programme) The data which has been anonymised and provided to PHE is used to analyse variations and trends in the percentages of children who are underweight, normal weight, overweight and obese. The results of these analyses are published by PHE in a range of indicators, analytical tools and reports such as the local authority profiles at http://fingertips.phe.org.uk/profile/national-child-measurement-programme. PHE also use the data to provide statistics to schools on the percentage of children who are an unhealthy weight. The NCMP findings are used by PHE to develop national policies to increase the proportion of children who are normal weight, and are used by Local Authorities to commission and provide services that support families to make healthy lifestyle changes. Personal Social Services Survey of Adult Carers in England (PSS- SACE) PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are being used to develop further indicators of care-giving across demographic groups and geographic areas for inclusion in the Dementia Profile published at https://fingertips.phe.org.uk/profile-group/mental-health. The results of these analyses are being used to understand more about the care provided to people with dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health. Recorded Dementia Diagnoses (RDD) Data Set PURPOSE: (PHE Mental health work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the Dementia Profile and the Common Mental Health Disorders profile at https://fingertips.phe.org.uk/profile-group/mental-health. The findings of these analyses are also used to monitor progress in improving the diagnosis and treatment of dementia as set out in the Prime Minister's Challenge on Dementia 2020 and in the NHS England Five Year Forward View for Mental Health. Sexual and Reproductive Health Activity Data (SRHAD) PURPOSE: PHE Health protection work programme) The results of the analyses undertaken by PHE are published in a range of indicators, analytical tools and reports such as the local authority Sexual and Reproductive Health Profiles at https://fingertips.phe.org.uk/profile/sexualhealth. The SRHAD findings are used by PHE to develop and monitor national policies for Sexual Health and HIV, and by Local Authorities to provide SRH services to improve sexual and reproductive health across England.

Processing:

The patient identifiable DIDS data provided by NHSD is held by PHE in the secure National Cancer Register system. Access to the identifiable data is limited to named PHE staff who are responsible for ensuring the completeness of the cancer registration records and the accuracy of the linkage to the DIDS data. Some of the analysis of the linked data is undertaken using identifiable data but the bulk is carried out using a version of the data that has had direct patient identifiers removed and replaced with pseudonyms. The analysis of the DIDS data is undertaken for the purposes described in this table. The DIDS data is not used for any purpose other than to analyse the treatment of patients with cancer. While the DIDS data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE cancer register uses of DIDS. The patient identifiable HES data provided by NHSD is held by PHE in the secure National Cancer Register system. Access to the identifiable data is limited to named PHE staff who are responsible for ensuring the completeness of the cancer registration records and the accuracy of the linkage of the HES data. Some of the analysis of the linked data is undertaken using identifiable data but the bulk is carried out using a version of the data that has had direct patient identifiers removed and replaced with pseudonyms. The analysis of the HES data is undertaken for the purposes described in this table. While the HES data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE cancer register uses of HES. All the data fields held by PHE in the cancer register are described in the Cancer Outcomes and Services Data set (COSD), which has been approved by the Standardisation Committee for Care Information based in NHS Digital (content.digital.nhs.uk/isce/publication/SCCI1521). The patient identifiable HES data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named staff in the PHE National Infection Service who are only allowed to use the data for the purposes described in this table. The information systems holding the linked data on antimicrobial resistance and healthcare associated infections, infectious disease control, respiratory diseases, and vaccine safety and effectiveness are all held and managed separately. While the HES data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the health protection uses of HES by PHE described here. The patient identifiable HES data provided by NHSD is held by PHE in the secure CARDS register system. Access to the identifiable data is limited to named PHE staff who are responsible for ensuring the completeness of the CARDS registration records and the accuracy of the linkage of the HES data. Some of the analysis of the linked data is undertaken using identifiable data but the bulk is carried out using a version of the data that has had direct patient identifiers removed and replaced with pseudonyms. The analysis of the HES data is undertaken for the purposes described in this table. While the HES data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE CARDS register uses of HES. The patient identifiable SUS data provided by NHSD is held by PHE in the secure National Cancer Register system. Access to the identifiable data is limited to named PHE staff who are responsible for ensuring the completeness of the cancer registration records and the accuracy of the linkage of the SUS data. Some of the analysis of the linked data is undertaken using identifiable data but the bulk is carried out using a version of the data that has had direct patient identifiers removed and replaced with pseudonyms. The analysis of the SUS data is undertaken for the purposes described in this table. While the SUS data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE cancer register use of SUS. The anonymised HES data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of HES. The HES data is anonymised so cannot and will not be directly linked by PHE to any other data, but it is analysed alongside other related sources of information such as local area deprivation scores to assess whether there are differences in disease rates and inequalities in the provision of hospital treatment between groups in the population. PHE only provides aggregate statistics and data tables based on HES data to Local Authorities. Local Authority access to anonymised HES extracts of data for individual patients is managed directly by NHSD. The anonymised MHSDS data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of MHSDS. The MHSDS data is anonymised so cannot and will not be directly linked by PHE to any other data, but it is analysed alongside other related sources of information such as substance misuse data. The anonymised NCMP data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of NCMP. The NCMP data is anonymised so cannot and will not be directly linked by PHE to any other data, but it is analysed alongside other related sources of information such as the location of fast food outlets to see if there is any association between this and levels of childhood obesity. The anonymised SHRAD data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of SRHAD. The SRHAD data is anonymised so cannot and will not be directly linked by PHE to any other data but it is analysed alongside other related sources of information such as the Genitourinary Medicine Clinic Activity Dataset (GUMCAD) to monitor STI rates and the treatments received by patients from SRH clinics. The patient identifiable PCMD data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named staff who are only allowed to use the data for the purposes described in this table. While the PCMD data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the uses of PCMD by PHE described here. The PCMD data is not directly linked by PHE to any other data but it is analysed alongside other related sources of information such as local area deprivation scores to assess whether there are differences in death rates between groups in the population and between different geographic areas. PHE only provides aggregate statistics and data tables based on PCMD data to Local Authorities and CCGs. Most Local Authorities have direct access to PCMD, which is managed by NHSD. The patient identifiable Linked HES/ONS Mortality data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named staff in the PHE End of Life Care team who are only allowed to use the data for the purposes described in this table. While the Linked HES/ONS Mortality data is identifiable, the 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the uses of Linked HES/ONS Mortality by PHE described here. The Linked HES/ONS Mortality data is not directly linked by PHE to any other data. The anonymised HSE data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of HSE. The HSE data is anonymised so cannot and will not be directly linked by PHE to any other data. The anonymised PSS-SACE data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of PSS-SACE. The PSS-SACE data is anonymised so cannot and will not be directly linked by PHE to any other data. The anonymised RDD data provided by NHSD is held by PHE in a secure data server. Access to the data is limited to named PHE staff who are only allowed to use the data for the purposes described in this table. The 12 ‘limited access controls’ set out by the ICO for anonymised data and described in Appendix C of this Memorandum apply to all the PHE uses of RDD. The RDD data is anonymised so cannot and will not be directly linked by PHE to any other data. The patient identifiable data provided by PHE to NHSD is held on secure server with access controls restricting access only to authorised internal users. Access is provided to staff directly involved in providing data to approved customers via the NHSD Data Access Request Service and to support PHE in query resolution and the accurate identification of cancer patients. Where cancer registration data is linked to other NHSD data sets, this is only undertaken where this is required and justified for internal use or to support authorised access to the patient status and tracking service where a legal basis is in place. Identifiable and non-identifiable data items are stored in separate tables to allow access to be granted independently as required for user needs. Where required for internal analysis, this is undertaken where possible on the non-identifiable table, including where linked to other data sets via a common NHSD pseudonymisation key.


Project 5 — DARS-NIC-148473-G85HC

Opt outs honoured: N

Sensitive: Sensitive

When: 2016/04 (or before) — 2018/09.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Other-NHS Regulations (3), Health and Social Care Act 2012 – s261(2)(c)

Categories: Identifiable

Datasets:

  • MRIS - Cohort Event Notification Report
  • MRIS - Cause of Death Report
  • MRIS - Flagging Current Status Report

Objectives:

To describe the clinical state at diagnosis and long-term outcome of HTLV infected individuals, 2). To investigate factors associated with transmission, disease an survival in HTLV infected individuals. Uninfected recipients (of donated blood) identified in the 'lookback' will provide a comparative group.


Project 6 — DARS-NIC-148465-PJQ4L

Opt outs honoured: Y, No - flow to PHE under a memorandum of understanding (Statutory exemption to flow confidential data without consent)

Sensitive: Sensitive

When: 2016/04 (or before) — 2019/12.

Repeats: Ongoing, One-Off

Legal basis: Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Health and Social Care Act 2012 – s261(7)

Categories: Identifiable

Datasets:

  • MRIS - Cohort Event Notification Report
  • MRIS - Cause of Death Report
  • MRIS - Flagging Current Status Report
  • MRIS - Members and Postings Report

Objectives:

To describe the current biochemical, histological and clinically apparent liver disturbance in cases of HCV infection, and to relate current status to the interval since presumed infection and other potential prognostic factors.

Yielded Benefits:

Regarding yielded benefits, these data are critical for PHE's modelling of the HCV epidemic in England. Public Health England employ a Bayesian back-calculation approach, combining data on severe HCV-related liver disease and disease progression, to reconstruct historic HCV incidence and estimate current prevalence. PHE use these data to define disease progression rates to inform their modelling of the HCV disease burden in England and the UK. Modelling results are presented in a variety of papers and reports, including the annual national HCV in England reports that are available via this link: https://www.gov.uk/government/publications/hepatitis-c-in-the-uk In addition to the recent publications in the above link, past publications are also listed below, but it is important to note that most of the publications currently in preparation are being held up until this DSA is renewed, so PHE cannot currently update the survival analyses or respond to any requests in this area that are likely to come PHE's way from the government’s ongoing Infected Blood Enquiry. Ross J. Harris HH, Sema Mandal, Mary Ramsay, Peter Vickerman, Matthew Hickman, Daniela De Angelis. Monitoring the hepatitis C epidemic in England and evaluating intervention scale-up using routinely collected data. Journal of Viral Hep.2019;00:1-12. Hepatitis C: Estimating Disease Burden. Updated November 2018. https://www.gov.uk/government/publications/hepatitis-c-commissioning-template-for-estimating-disease-prevalence Harris RJ, Martin, N. K., Rand E, Mandal S, Mutimer D, Vickerman P, Ramsay ME, et al. New treatments for hepatitis C virus (HCV): scope for preventing liver disease and HCV transmission in England. Journal of Viral Hepatitis. 2016(8):631-43. Increased uptake and new therapies are needed to avert rising hepatitis C-related end stage liver disease in England: Modelling the predicted impact of treatment under different scenarios. Journal of Hepatology 2014; 61: 530-7. Hepatitis C in England/the UK, annual reports from 2005-2019 (https://www.gov.uk/government/publications/hepatitisc-in-the-uk) Improved hepatitis C treatment response in younger patients: findings from the UK HCV National Register cohort study. Epidemiology and Infection 2011; 2012 Oct;140(10):1830-7 The impact of mode of acquisition on biological markers of paediatric hepatitis C virus infection. Journal of Viral Hepatitis. 2011; 18: 533-541. Spontaneous loss of hepatitis C virus RNA from serum is associated with genotype 1 and younger age at exposure. Journal of Medical Virology 2011; 83: 1338-1344. Harris HE, Costella A, Amirthalingam G, Alexander G, Ramsay ME, Andrews N; the UK HCV National Register Collaborators. Improved hepatitis C treatment response in younger patients: findings from the UK HCV National Register cohort study. Epidemiology and Infection 2011; Nov 29:1-8. The burden of Hepatitis C in England. Journal of Viral Hepatitis 2007; 14 (8): 570􀍴576. Does the clinical outcome of hepatitis C infection vary with the infecting hepatitis C virus type? Journal of Viral Hepatitis 2007; 14: 213-220. Harris HE, Mieli-Vergani G, Kelly D, Davison S, Gibb D and Ramsay ME. A national sample of individuals who acquired their hepatitis C virus infections in childhood/adolescence – risk factors for advanced disease. Journal of Paediatric Gastroenterology and Nutrition 2007; 45 (3); 335-341. H.E. Harris, K.P. Eldridge, S. Harbour, G. Alexander, C.-G. Teo, M.E. Ramsay and The HCV National Register Steering Group. Does the clinical outcome of hepatitis C infection vary with the infecting hepatitis C virus type? Journal of Viral Hepatitis March 2007; 14 (3):213-20. Survival of a national cohort of hepatitis C virus infected patients, 16 years after exposure Epidemiology and Infection 2006; 134: 472-477. Estimated progression rates in three United Kingdom hepatitis C cohorts differed according to method of recruitment. Journal of Clinical Epidemiology 2006; 59: 144-152. Sweeting MJ, De Angelis D, Neal KR, Ramsay ME, Wright M, Brant L, Harris HE and the Trent HCV Study Group. Estimating progression to cirrhosis in three UK hepatitis C cohorts: the effect of recruitment bias. Journal of Clinical Epidemiology 2006; 59: 144-152. Pathways of care and resource utilization in a national cohort of patients with transfusion-acquired hepatitis C. Journal of Viral Hepatitis 2005; 12 (6): 618-626. Harris HE, Ramsay ME, Andrews NJ. Survival of a national UK cohort of hepatitis C virus infected patients 16 years after exposure. Epidemiology and Infection 2006; 134: 472-7. Harris HE, Ramsay ME, Andrews NJ - Epidemiology and Infection 2006; 134: 472-7 (PDF, 98 KB) © Cambridge University Press 2005 Cambridge Journals Online - Epidemiology and Infection Brant L, Harris HE, Ramsay ME, Grieve, R, Roberts J on behalf of the HCV national register steering group. Pathways of care and resource utilisation in a national cohort of patients with transfusion-acquired hepatitis C. Journal of Viral Hepatitis 2005; 12 (6): 618-26. Helen E Harris, Mary E Ramsay, Nick Andrews, Keith P Eldridge on behalf of the HCV National Register Steering Group. Clinical course of hepatitis C virus during the first decade of infection: cohort study. BMJ 2002; 324:1-6. H. E. Harris, M. E. Ramsay, J. Heptonstall, K. Soldan, K. P. Eldridge, on behalf of the HCV National Register Steering Group. The HCV National Register: towards informing the natural history of hepatitis C infection in the UK. Journal of Viral Hepatitis November 2000; 7 (6): 420-7.

Expected Benefits:

The HCV National Register population is one of the largest cohorts of patients in Europe who acquired their HCV infections on a known date and so the information on progression of their liver disease post-infection, and their clinical outcomes, are invaluable. Now that it is virtually impossible to acquire hepatitis C via blood transfusion in the UK due to screening, the possibility of recruiting such a large group of individuals who acquired their HCV infection on a known date (in who statistically reliable findings are possible) is now virtually impossible. The HCV Register is supported by clinicians and patients throughout the country and response rates to clinical follow-up have never fallen below 90% to date (well above usual levels). Because the natural history/clinical course is long and many of the patients in the Register have now been infected for more than 20-30 years, the Register contains a wealth of data that is becoming increasingly valuable as the years go by. The objective for processing of the data has been to describe the current biochemical, histological and clinically apparent liver disturbance in cases of HCV infection, and to relate current status to the interval since presumed infection and other potential prognostic factors. The HCV National Register uses all of the collected data to address these questions and to assess the burden of HCV-related disease. In addition, data are used to produce peer reviewed scientific publications, and to inform Public Health England modelling work on the future burden of HCV in the NHS. These data are used to inform national policy on how best to tackle hepatitis C infection in UK countries and help monitor the progress of HCV elimination strategies. The outputs help to determine the current and future burden of HCV-related disease on health care services and to assess the impact of currently available treatment as well as those that may become available in the future. This is important for the commissioning of treatment and care services, and for monitoring the progress of the WHO Global Health Sector Strategy to eliminate hepatitis C as a major public health threat by 2030, that the UK government is signed up to. It is also key that PHE follow this group as they largely comprise transfusion recipients who received HCV infected blood from National Health services prior to the introduction of HCV screening of the blood supply. These individuals are subject to the ongoing government Infected Blood Enquiry, and information on disease in this cohort helps to inform compensation payments.

Outputs:

Data on disease progression and clinical outcome from the HCV National Register are used by PHE’s statisticians in mathematical models that help predict numbers of patients with HCV infection and the burden this will place on NHS health services. This is important for local planning of treatment and care services and to inform commissioners of the need to provide these services to the population. Information from these analyses are also used to monitor progress against WHO targets, that UK governments are signed up to, to eliminate HCV by 2030. Data are processed to produce peer reviewed scientific publications, presentations at scientific meetings on the natural history/outcome/burden of HCV infection. These results of these analyses will be published in the HCV in the UK 2019 report (published around September 2019) and the HCV in England 2020 report (published around March 2020). These are both annual reports which have been published since 2005 and can be seen at the following link: https://www.gov.uk/government/publications/hepatitis-c-in-the-uk An updated survival analysis is planned once the data subject to this application are available, along with further analyses to inform HCV disease progression rates/outcomes (2019-2021).

Processing:

Data from NHS Digital include death notifications, such as full details of cause of death and date of death, and cancer events, including details of the type and site of cancer. In addition, Public Health England (PHE) also receives information from NHS Digital to contact Health Administration Centres to allow PHE to re-establish links via the participant's current general practitioner if they become lost to follow-up. Each patient enrolled into the HCV National Register is given a unique identifier. This identifier is used to link data received from NHS Digital to existing clinical data for each patient. These data enable PHE to establish which patients in the HCV National Register have died and the cause of their death and whether they have been diagnosed with cancer (and whether any deaths or cancers might be related to their HCV infections). The HCV National Register does not contain patient names or addresses; the data contained in the Register are identifiable but anonymised. PHE do not request name or address of flagged patients from NHS Digital, therefore patient identifiers such as NHS number and date of birth sent to PHE by NHS digital are data PHE already has for each patient. NHS Digital data are received via a secure file transfer system and downloaded into a secure folder on a secure PHE network. Only key authorized users can access this folder. The data are then imported into the HCV National Register which is held in a password protected Access database on a secure network drive at PHE’s Colindale site. Only key authorized personnel have access to the database. PHE encrypted laptops will be used to access and process the data. The data is never stored on local hard drives. NHS Digital data are kept in separate tables within the register database i.e. one table for members and postings, one for deaths and one for cancer events; these tables are linked to other data within the Register via their unique register number. The data are not linked to any external data. Outputs from the Register, like presentations or papers in peer review journals, contain no information on individual patients or any information that could be linked by others to individual patients; only aggregated data are shared Every 3-5 years, patients are followed-up. Letters are sent out to patients’ GP or consultant asking for an update on their patients’ health. If the GP or consultant no longer cares for the patient, PHE are informed. NHS Digital flagging data are then used to find the region in which the patient has currently registered with a GP. PHE are then able to contact the regional health administration centres to obtain details of the patient’s current GP. This process enables PHE to re-establish contact to obtain follow-up clinical information. Authorised users of the HCV National Register, including the data received from NHS Digital, are obliged to fully comply with the Data Protection Act 2018, together with all other related and relevant legislation (as amended or replaced from time to time) and with Department of Health directives covering issues of data sharing. All staff authorised to access the HCV National Register data have completed mandatory Information Governance training (Public Health England, Civil Service learning – Responsible for Information Asset Owner (IOA) Including Government Security Classifications 2014 and NHS Health Education England, NHS Data security Awareness level 1). A System Level Security Policy has been produced which records processing activities specifically for the HCV National Register, along with a Risk Assessment and Privacy Impact Assessment; these are held in an Asset Register at PHE. Electronic data are stored on secure PHE networks in folders that have restricted access to authorised personnel only. Any paper copies of forms are held in cupboards that are locked and held on a secure site. No data are given out that could lead to the identification of any individual patient either directly or via linkage to other data sources. These data are not shared with any third party in the format provided by the NHS Digital. Although no data are stored on the hard drive of computers at PHE, any computers that reach the end of their life are disposed of according to PHE policies which require hard disks to the erased or, where this is not possible, crushed by an official approved service provider. All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).


Project 7 — DARS-NIC-148219-ZHB4Z

Opt outs honoured: Y, N

Sensitive: Sensitive

When: 2016/04 (or before) — 2016/11.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data

Categories: Identifiable

Datasets:

  • MRIS - Cohort Event Notification Report
  • MRIS - Cause of Death Report
  • MRIS - Scottish NHS / Registration
  • MRIS - Members and Postings Report

Objectives:

The data supplied to HPA CRCE Epidemiology Section will be used only for the approved medical research - MR47 National Registry for Radiation Workers


Project 8 — DARS-NIC-148161-XXPS5

Opt outs honoured: Y

Sensitive: Sensitive

When: 2016/04 (or before) — 2016/11.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data

Categories: Identifiable

Datasets:

  • MRIS - Cohort Event Notification Report
  • MRIS - Cause of Death Report
  • MRIS - Scottish NHS / Registration

Objectives:

The data supplied to the HPA CRCE Epidemiology Section will be used only for the approved Medical Research project - MR185 - UK Participants in the UK Atmospheric Nuclear Weapons Test (NWTPS)


Project 9 — DARS-NIC-148119-WLQ4M

Opt outs honoured: Y, No - flow to PHE under a memorandum of understanding

Sensitive: Non Sensitive, and Sensitive

When: 2016/04 (or before) — 2020/01.

Repeats: Ongoing

Legal basis: Other-NHS Regulations (3), Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), NHS Regulations (3), Health and Social Care Act 2012 – s261(7)

Categories: Identifiable

Datasets:

  • MRIS - Cohort Event Notification Report
  • MRIS - Cause of Death Report
  • MRIS - Flagging Current Status Report
  • MRIS - Scottish NHS / Registration

Objectives:

Enhanced surveillance of individuals identified as at increased risk of vCJD/CJD in the UK due to iatrogenic exposures or other indicators of increased risk. This is a long term follow up study of people who have been placed at additional risk of contracting CJD. The aim of this work is to ascertain any CJD-related deaths amongst individuals identified by actions recommended by the CJD Incidents Panel as at increased risk of CJD. This information is critical to: a) improve assessment of the risks experienced by these individuals, and others in similar circumstances, b) inform and evaluate public health measures relating to these individuals; c) investigate factors associated with transmission, disease and survival in these individuals.


Project 10 — DARS-NIC-147794-JDPT1

Opt outs honoured: N

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2016/11.

Repeats: Ongoing

Legal basis: Other-NHS Regulations (3)

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report

Objectives:

Survival analysis of a cohort of Clostridium difficile infected and non- infected patients admitted to Addenbrooke’s Hospital between 2005 and 2007 To determine if Clostridium difficile (C. difficile) infection is associated with excess all cause mortality.