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 — 2020/07.

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 — 2020/07.

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 — 2020/07.

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
  • SUS plus - Admitted Patient Care (beta version)

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-201243-R7L2M

Opt outs honoured: No - data flow is not identifiable (Does not include the flow of confidential data)

Sensitive: Non Sensitive

When: 2020/06 — 2020/06.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012 - s261(5)(d)

Categories: Anonymised - ICO code compliant

Datasets:

  • NHS Health Checks

Objectives:

BACKGROUND TO HEALTH CHECKS DATA COLLECTION: The NHS Health Check is a health check-up for adults in England aged 40-74. It's designed to spot early signs of stroke, kidney disease, heart disease and type 2 diabetes. People aged 65 to 74 having an NHS Health Check are also told the signs and symptoms of dementia to be aware of and advised of ways to reduce their risk of dementia. As people get older, there is a higher risk of developing one of these conditions and an NHS Health Check helps find ways to manage or lower this risk. • NHS Health Checks are carried out by health professionals – often a nurse or healthcare assistant. • A range of data items are collected, including demographic and health items such as date of birth, NHS number, blood pressure and risk of cardiovascular disease. • 1.3 million people attend an NHS Health Check each year across England. The NHS Health Check has been in place since 2009, but there has been a lack of data collected on the programme. To date, this information has not been collected on a national scale. This new data collection will provide elements not currently available, including: • A national data collection of the range of data items relevant to delivery of and outcomes from the programme (in contrast to the current data availability, which includes only offers and uptake). • Up-to-date data, allowing more real time programme monitoring and response. • Data at local authority / CCG level, as well as national level data, which will allow commissioners, providers and clinicians to better understand delivery and make local improvements. • Understanding, at a local level, of demographic and other characteristics in order to minimise inequalities of access and uptake, and follow up interventions. • Future linkage to HES and mortality data, subject to approval of further application. This will enable assessment of impact of the NHS Health Check on population health outcomes. In most cases, general practices carry out the NHS Health Check. If third party providers carry out the NHS Health Check, in most cases they send their outcome data to the patients GP. General Practice are the data controller of their patients’ data as it is stored in their system. These data will be collected via NHS Digital’s General Practice Extraction Service (GPES). This will involve an extract (a copy) of these data that are held by general practices being provided to NHS Digital via the third-party IT system suppliers. The existing third-party IT system suppliers act as the Data Processors on behalf of the general practices. NHS Digital are responsible for the collection and processing of NHS Health Checks data, and for creating a national dataset. PHE are responsible for the analysis and evaluation of the dataset, and will work in collaboration with NHS Digital on this analysis. See “Purpose of this Application” below for further information. PURPOSE OF THE APPLICATION: The purpose of this application is to request NHS Health Check data to be shared with PHE to undertake vital programme monitoring and allow the agency and wider system to understand the benefits of NHS Health Checks for patients and establish whether the programme provides value for money for health and care economy. On average, local government spends £65 million of the yearly Public Health Grant on commissioning the NHS Health Check programme. Without this data collection, PHE is unable monitor the NHS Health Check programme and will not be able to review how effective it has been for members of the public. Currently, the only data available nationally describe the number of NHS Health Check offered and completed in each of the 152 local authorities in England. This new data extract will allow PHE to examine in more details the delivery of the NHS Health Check programme and to highlight good practice and opportunities for improvement. For example, PHE will investigate whether some categories of patients might be less likely to attend a NHS Health Check. A better understanding of the type of patients not taking up the opportunity of this free NHS Health Check will allow local commissioners and providers to modulate the way they deliver the programme to ensure equity of access to all members of public, in particular those at greatest risk of preventable ill health and death. Analysis conducted by PHE will also report on the cardiovascular risk factors of patients offered and / or having a check. As the findings will be presented at local authority and CCG level, the local economy will be able to better plan interventions aiming to help patients reducing their risks, such as smoking cessation services or high blood pressure clinics. A series of monitoring questions have been developed and agreed: a list is available in Appendix G of the attached Primary Care Data Information Form. In addition to information recorded for patients aged 40-74 years (the age group that the NHS Health Check is aimed at), PHE will also use the information recorded for people aged 18-39 years who have been invited for and/or attended an NHS Health Check (Cohort 4). Some areas choose to extend the NHS Health Check offer to people who have not reached the eligible age of 40 but little data is available on the impact of this permitted practice. Although PHE anticipates the numbers in this group to be small, this information will help in understanding the benefits of extending the age range. Analytical strategy PHE and NHS Digital have worked together to produce an Analytical Strategy for the data extraction, described as follows: The analytical plan covers four areas: process, health data, outcomes and models. The intention is that the first two stages - process and health data - will be the primary focus of the initial data analysis. This is expected to last 6-12 months from receipt of the data. Stages 1 and 2 deal with the monitoring focus of the data extract, as indicated in Appendix G of the Primary Care Data Application Form (PCDAF) for the data extract. After the process and health data stages are complete, PHE will explore stages 3 and 4 as an extension of its monitoring of the impact of the programme. Stages 3 and 4 will evaluate longer term outcomes following an NHS Health Check and explore the development of models to evaluate risk prediction, economic impact and interventions related to the check. For stages 3 and 4, PHE will approach IGARD for further review of its uses of the data. 1. Stage 1: Process • Aims to understand the achievements and ongoing challenges to highlight specific opportunities to enhance delivery of the NHS Health Check programme. 2. Stage 2: Health Data • To describe the health measures in relation to demographics (e.g. age, ethnicity, gender, socioeconomic factors) in both the NHS Health Check population and, where possible, in those invited for NHS Health Checks, but who did not take up the offer. The health data will include information about the follow-up management and referral of patients who have had their NHS Health Check and those who have been invited for their check, but did not attend. 3. Stage 3: Outcomes • To determine the relationship between health measures linked to the NHS Health Check and important medical outcomes including mortality and medical events (e.g. Office for National Statistics mortality data, Hospital Episode Statistics, other cardiovascular relevant databases such as the National Institute for Cardiovascular Outcomes Research (NICOR). 4. Stage 4: Models • To create models to:  Predict risk of future health and social events;  Estimate economic impact to individuals and society of the health measures collected in NHS Health Checks; and  Evaluate potential benefits from interventions (targeted and universal) on individual and population health.

Yielded Benefits:

n/a

Expected Benefits:

The NHS Health Check programme has been operating for a number of years with only two data indicators available to track progress (offer and uptake). The GPES extract will enable for the first time the analysis of a range of data items relevant to delivery and outcomes of the programme across the country. PHE will produce a suite of analytical products: • Reports: a series of publicly available reports, presenting aggregated data on the characteristics and CVD risks factors of the people offered or having a check. • Interactive dashboard: a digital dashboard of the information broken down into national and local area data • Other reports and peer reviewed publications: as discovery of this complex dataset progresses, more detailed analysis will be performed using sophisticated statistical testing. Data presented will include, for example, characteristics of the two cohorts of individuals (offered and having a check) vs (offered and not having a check) per year, split by age group, gender, ethnicity, socioeconomic group; and comparisons between the two groups. Significance testing and logistic regression methods will be applied to estimate the likelihood of certain events occurring. The key audiences for these products will include i) providers of the NHS Health Check, ii) commissioners of the NHS Health Check, and iii) other stakeholders (for instance, the primary care and public health community, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme. The dashboard will particularly interest local commissioners and providers, while the reports and publication will primarily interest other stakeholders noted above. In England, millions of persons are unaware that they have conditions such as hypertension or atrial fibrillation, making them particularity susceptible to heart attack or stroke. Amongst those, many would be eligible for an NHS Health Check. The latest statistics on the programme activity show that if most eligible persons are offered an NHS Health Check, in some area less than a third of people take up the offer, therefore missing an opportunity to address their risk of cardiovascular disease. The information published by PHE will aim to support local health economies in understanding the characteristics of those not taking up an NHS health Check offer. Patients found out by the NHS Health Check programme to be at high risk of CVD would be expected to receive information, advice, lifestyle or clinical intervention. Patients diagnosed of a CVD condition following an NHS Heath Check would be expected to be offered relevant treatment or intervention. The information published by PHE will aim to support local health economies in planning and refining their approach to risk factors management and CVD prevention according to the needs of their population. Finally, the NHS Health Programme is arguably one of the largest prevention programmes of its type in the world and the findings published as a result of this data extract will be of high interest to other countries considering the development of such a programme. What is the logical sequence of events that would need to take place in order for such benefits to be achieved including actions/decisions by third parties? • findings published by PHE in collaboration with NHS Digital • local health economies consider the findings to understand delivery at local level, using for example benchmarking and triangulating against local intelligence • local health economies identify areas for improvement (attendance, risk identification, risk management) local health economies implement changes (for example, provide NHS health Check appointments in alternative location) Why is it reasonable to expect that the expected benefits will be realised (e.g. has there been prior engagement with key decision/policy makers?)? Currently, the only data available nationally describe the number of NHS Health Checks offered and completed in each of the 152 England local authorities. Research datasets have been so far the only data source available to monitor and evaluate the programme. The PHE CVD Prevention Team has actively encouraged policy makers, decision makers, commissioners and providers to use published research to inform delivery of the programme. For example, infographics and Top Tips were produced based on the findings from Queen Mary, Imperial Collage and Cambridge universities. These tools have been extremely well received and used by local health economies. However, there are some limits to how relevant findings from a research dataset are to specific local areas. Across the country, there is a wide diversity of delivery methods for the programme: this allows each local government to commission a programme best adapted to their local residents. In terms of evaluation, however, it means that findings from a research paper might not be directly applicable to a specific local economy. Outputs from the data extract and in particular the dashboard will address this need for local granular data. Anticipated date to complete the local reports is by March 2019. What are the actual expected benefits and how do these benefit healthcare users? (e.g. cost/efficiency savings which would enable commissioners/care providers to reallocate funding to other areas of care benefitting care users; improved quality of care/reduced waiting times/improved ability of care providers to meet demand; improved survival rates; improved quality of life post-treatment/care, etc.). The expected benefits of the extraction include: • More up-to-date information on the programme, as current published research evaluations only cover the period up to 2013. • Information at local authority/CCG level that will allow commissioners, providers and clinicians to improve the effectiveness and cost-effectiveness of their local services. • Information needed to assess and address any inequalities of access and uptake of checks and of follow up interventions. • Potential for future linkage of the extracted data to subsequent HES and mortality data subject to future approvals. Having this information will carry the following expected benefits for service users: • Enhanced opportunity of access (where inequalities have been recorded) • Improvements in the local NHS Heath Check provided (where gaps in delivery have been recorded and where cases of good practice are uncovered and picked up in other areas) • Improvements in follow up management and referral (where gaps have been recorded and where cases of good practice are uncovered) • The above could lead to improved patient outcomes, in terms of diagnosis of conditions, prevention of conditions from developing, and management of conditions, where diagnosed. This has the potential to further reduce the incidence of cardiovascular conditions and incidents. Research to date has revealed that the NHS Health Check has likely prevented thousands of heart attacks and strokes. For instance, one study revealed that up to 8,400 heart attacks and strokes have been prevented over five years (http://www.pulsetoday.co.uk/news/clinical-news/nhs-health-checks-have-prevented-8400-heart-attacks-and-strokes-claims-study/20033492.article). This data will help local commissioners and providers to work towards further enhancing this number through localised improvement opportunities. The expected benefits for commissioners/care providers includes: • Information on local delivery of the programme, including gaps and what is working well, and allow comparisons with other areas • Information on what works well, which can help poor performing areas make improvements to their delivery • Improved recording of the NHS Health Check and follow up management (where gaps in recording data have been recorded). Clarify the expected magnitude of the impact. i.e. How many care users are expected to benefit? What is the expected impact in terms of cost/efficiency savings? On average, local government spends £65 million of the yearly Public Health Grant on commissioning the NHS Health Check programme. 15.5 million persons are eligible for a 5-yearly NHS Health Check. Since 2009, over 9 million people have had a check; since full roll out of the programme, around 1.3 million persons have had a check every year. It is too early to quantify the exact impact of the outputs, as the programme is implemented in a very diverse way across the country. However, over 5.6 million adults have undiagnosed hypertension in England and the NHS Health Check provides a cornerstone for the prevention of high blood pressure as well as six others of the top eight risk factors for early death and disability identified in the Global Burden of Disease (GBD) study. Any evidence allowing policy makers, deciders, commissioners and providers to make more informed decisions will impact through better planning of services to better address population health needs. For instance, where there is poor recording of diagnosis and measurement of risk, poor treatment of those at risk and low levels of referral to relevant services where appropriate, there will be opportunities to make improvements to planning and the allocation of resources. PHE analysis of the GPES extract will appear at a time when a large programme of work on CVD prevention is taking place in England: this will see (i) the publication of a tool showing the return on investment offered by a range of CVD prevention interventions, (ii) the development of an interactive model to explore NHS Health Check cost-effectiveness under different scenario. The information provided by these new tools, combined with the local intelligence derived from the data extract will give local health economies the strong evidence-based information they need to maximise the impact of the NHS Health Check programme. For example: Dashboard based on data extract: What CVD risks are identified in a local area? What interventions currently are offered to patients at high risk of CVD? Return on investment tool: What intervention would be best adapted to this local area? NHS Health Check cost effectiveness model: how could local delivery of the programme be improved to increase detection of risks?

Outputs:

PHE and NHS Digital will work together on a joint publication/report that will be published and made available to the public. There is a working group in place, and this advisory board will advise where and how this will be published. Currently, there is no confirmed target date for this. However, PHE would aim for the release of head line findings by March 2019. All outputs will be anonymous and will not report on individual patients. No outputs will contain any personal identifiable data, and individual GP practices will not be identifiable. The following outputs as a minimum will result from stages 1 and 2 (Process and Health data stages, as described above): 1. Report: A publicly available summary and detailed report of the findings from the data extraction 2. Publication: A publication resulting from the findings of the data analysis, intended for journal submission 3. Interactive dashboard: As a dashboard of information providing using Power BI, broken down into national and localised findings. Localised findings will be by local authority and clinical commissioning group areas. It is intended that PHE and NHS Digital will work collaboratively on the three proposed outputs. The report and interactive dashboard would be made publicly available on the PHE and NHS Digital websites, while the publication would depend upon the journal in which it appears. The dashboard might be a similar design to the NHS Digital/PHE work on learning disabilities: https://digital.nhs.uk/GP-data-hub/health-care-learning-disabilities-in-GP-data-hub The data is intended to be useful to the following audiences: • Providers of the NHS Health Check • Commissioners of the NHS Health Check • Other stakeholders (for instance, NHS England, patients and the public, the primary care community, government, policy makers, charities, UK and international researchers) who wish to better understand the status and outcomes related to the NHS Health Check programme. It is envisaged that the outputs from stages 3 and 4 (Outcomes and Models, as described above) would be an extension of PHE’s monitoring of the impact of the NHS Health Check programme, and include: 1. Collaborative reports and research publications created with academic partnerships 2. Linked datasets demonstrating the relationship between the NHS Health Check and longer term health outcomes, mortality, and social (non-medical) issues 3. New models that link the NHS Health Check with risk prediction, economic impact and interventions. As detailed previously, stages 3 and 4 will be subject to a further application and subsequent IGARD review.

Processing:

DATA FLOW: NHS Digital to PHE a) NHS Digital sends psuedonymised data to PHE via Secure Electronic File Transfer (SEFT) or a similar secure mechanism of sharing data. b) Data will be stored by PHJE either within a dedicated SQL Server 2017 Database hosted on PHE internal servers, or a dedicated network share both of which are PHE approved to store PID. Access to these is strictly controlled Data will only be accessed by individuals within PHE who have authorisation from NHS Digital to access the data for the purpose(s) described, all of whom are substantive employees of PHE. There will be no requirement nor attempt to re-identify individuals from the data. The data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide. Data Requirement The full amount of health check data being collected (for the cohorts defined) is required so that PHE can undertake monitoring the NHS Health Check programme. It is a national programme, so national data is required in order to assess geographical trends and identify any groups of patients that are not attending their NHS Health Check. There was a lengthy consultation process in order to gain approval for the data collection and it went through the SCCI approval process twice. Consideration was given to the amount of data to be collected and concerns were raised during the first SCCI consultation about the collection being excessive. Many attempts were made to minimise the amount of data involved. As a result of further consultation, the Royal College of General Practitioners (RCGP) and the British Medical Association (BMA) agreed to the collection and SCCI assurance was provided on 31 August 2017. A post implementation review will take place after the first data collection to check that the purposes of the extract were met and that the amount of data collected is not excessive. 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 ie: employees, agents and contractors of the Data Recipient who may have access to that data). There will be no requirement nor attempt to re-identify individuals from the data. The data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the PHE standard for statistical disclosure control. The data from NHS Digital will not be used for any other purpose other than that outlined in this Agreement and no further linkages will be permitted under this agreement. Data Access There will be only one physical copy of the data, stored on one of the two servers at the storage locations detailed. The named analysts working on this project will access this unique copy of the data across the PHE network via SQL Server Management Studio. They will, in effect, only be viewing the data which will physically remain within on the Server. If data is required for use outside of the SQL Server environment staff will be given access to a secure area of the PHE network where it can be used by other software (e.g. SPSS or STATA). This secure area of the PHE network will also be located on the Porton or Colindale Servers. Staff will not be permitted to download or save the record level data on any other part of the network. Access to the data will be granted to analysts on an individual basis. The data will only be accessed from within PHE offices and by connecting directly to the PHE network.


Project 6 — 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 7 — 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 8 — 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 9 — 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 10 — 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) — 2020/03.

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 11 — 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.