This publication provides statistics on the number of unique NHS numbers with an associated national data opt-out. The national data opt-out was introduced on 25 May 2018. It was introduced following recommendations from the National Data Guardian. It indicates that a patient does not want their confidential patient information to be shared for purposes beyond their individual care across the health and care system in England. The service allows individuals to set a national data opt-out or reverse a previously set opt-out. It replaced the previous type 2 opt-outs which patients registered via their GP Practice. Previous type 2 opt-outs have been converted to national data opt-outs each month, until November 2018. This is why the monthly increase in opt-outs decreases from December 2018 onward. This publication includes the number of people who have a national data opt-out, broken down by age, gender and a variety of geographical breakdowns. From June 2020 the methodology for reporting NDOP changed, representing a break in time series. Therefore, caution should be used when comparing data to publications prior to June 2020. The number of deceased people with an active NDOP has been captured and reported for the first time in June 2020. Please note that this publication is no longer released monthly. It is released annually or when the national opt-out rate changes by more than 0.1 per cent. Prior to September 2020 there is a slight inflation of less than 0.05 percent in the number of National Data Opt-outs. This is due to an issue with the data processing, which has been resolved and does not affect data after September 2020. This issue does not disproportionately affect any single breakdown, including geographies. Please take this into consideration when using the data. As of January 2023, index of multiple deprivation (IMD) data has been added to the publication, allowing the total number of opt-outs to be grouped by IMD decile. This data has been included as a new CSV, and has also been added to a new table in the summary file. IMD measures relative deprivation in small areas in England, with decile 1 representing the most deprived areas, and decile 10 representing least deprived. Please note that the figures reported in IMD decile tables will not add up to the national totals. This is because the IMD-LSOA mapping reference data was created in 2019, and any geography codes added since then will not be mapped to an IMD decile. For more information about the reference data used, please view this report: https://www.gov.uk/government/statistics/english-indices-of-deprivation-2019 Management information describes aggregate information collated and used in the normal course of business to inform operational delivery, policy development or the management of organisational performance. It is usually based on administrative data but can also be a product of survey data. We publish these management information to ensure equality of access and provide wider public value.

Data on patient opt-out information received from GP Practices.

There are two types of opt-out:

• A type 1 opt-out prevents information being shared outside a GP practice for purposes other than direct care.

• A type 2 opt-out prevents information being shared outside of the HSCIC for purposes beyond the individual's direct care.

A more detailed description of opt-outs is available from the HSCIC website

Type 1 and type 2 opts-outs are presented at GP practice level. Type 1 opt-outs are reported as instances (i.e. number of times the opt-out code occurs within GP records, which may include the same patient recorded at more than one practice) and there is no way to de-duplicate this information.

Levels of type 1 opt-outs are therefore likely to be higher than levels of type 2 opt-outs, which are de-duplicated.

This dataset contains responses from an online survey of 2187 participants primarily located in the UK. All participants stated that they had used the UK National Health Service (NHS) at some time in their lives. The data were collected between December 2018 and August 2019. Participants' views on data sharing - this dataset contains information about people's willingness to share mental and physical health data for research purposes. It also includes information on willingness to share other types of data, such as financial information. The dataset includes participants' responses to questions relating to mental health data sharing, including the trustworthiness of organisations which use such data, how much the presence of different governance measures (such as deidentification, opt-out, etc.) would alter their views, and whether they would be less likely to access NHS mental health services if they knew their data might be shared with researchers. Participants' satisfaction and interaction with UK mental and physical health services - the dataset includes information regarding participants' views on and interaction with NHS services. This includes ratings of satisfaction at first contact and in the previous 12 months, frequency of use, and type of treatment received. Information about participants - the dataset includes information about participants' mental and physical health, including whether or not they have experience with specific mental health conditions, and how they would rate their mental and physical health at the time of the survey. There is also basic demographic information about the participants (e.g. age, gender, location etc.).

Abstract copyright UK Data Service and data collection copyright owner.

Background
The Commission for Health Improvement (CHI), in conjunction with the Department of Health (DH), appointed Aston University to develop and pilot a new national National Health Service (NHS) staff survey, commencing in 2003, and to establish an advice centre and web site to support that process. Administration of the programme was taken over by the Healthcare Commission in time for the 2004 series. On the 1st April 2009, the Care Quality Commission (CQC) was formed which replaced the Healthcare Commission (users should note that some of the surveys in the series conducted prior to this date will still be attributed to the Healthcare Commission). In 2011 the Department of Health took over management of the survey. Since 2013 NHS England (NHSE) have been in charge of the survey programme. Researchers at Aston University were responsible for the initial development of the survey questionnaire instrument, and for the setting up of the NHS National Staff Survey Advice Centre. From 2011, Picker Institute Europe took over from Aston University as survey contractors. All organisations concerned worked in partnership to consult widely with NHS staff about the content of the new national survey. The work was conducted under the guidance of a stakeholder group, which contained representatives from the staff side, CQC, DH, human resources directors, Strategic Health Authorities and the NHS workforce.

Aims and conduct of the survey
The purpose of the annual NHS staff survey is to collect staff views about working in their local NHS trust. The survey has been designed to replace trusts' own annual staff surveys, the DH '10 core questions', and the HC 'Clinical Governance Review' staff surveys. It is intended that this one annual survey will cover the needs of HC, DH and trusts. Thus, it provides information for deriving national performance measures (including star ratings) and to help the NHS, at national and local level, work towards the 'Improving Working Lives' standard. The design also incorporates questions relating to the 'Positively Diverse Programme'. Trusts will be able to use the findings to identify how their policies are working in practice. The survey enables organisations, for the first time, to benchmark themselves against other similar NHS organisations and the NHS as a whole, on a range of measures of staff satisfaction and opinion. From 2013, the NHS Staff Survey went out to all main trust types - social enterprises, clinical commissioning groups and clinical support units were able to opt themselves in to the survey. Organisations were allowed to conduct the survey electronically and to submit data for an entire census or extended sample of their organisation. Previously the sample was restricted to 850 staff.

The collection of data (i.e. the survey fieldwork) is conducted by a number of independent survey contractors (see documentation for individual survey information). The contractors are appointed directly by each NHS trust in England and are required to follow a set of detailed guidance notes supplied by the Advice Centre (see web site link above), which covers the methodology required for the survey. For example, this includes details on how to draw the random sample, the requirements for printing of questionnaires, letters to be sent to respondents, data entry and submission. At the end of the fieldwork, the data are then sent to the Advice Centre. From the data submitted, each participating NHS trust in England receives a benchmarked 'Feedback Report' from the Advice Centre, which also produces (on behalf of the Department of Health) a series of detailed spreadsheets which report details of each question covered in the survey for each participating trust in England, and also a 'Key Findings' summary report covering the survey findings at national level. Further information about the survey series and related publications are available from the Advice Centre web site (see link above).


As in previous years, the 2009 survey contained different versions of the core questionnaire for each of the four main sectors (acute, ambulance, mental health and primary care). The majority of the content is the same across the different versions of the core questionnaire but there were a few sector specific questions.

Main Topics:
Topics covered in the survey include: work-life balance; appraisal; training, learning and development; team working; health and safety; errors and incidents witnessed; job characteristics and arrangements; management and supervision; perceptions of organisation worked for; harassment, bullying and violence; and respondents' demographic characteristics.

Sector-specific questions include: (acute) - infection control; (ambulance) - communication and distance between trust headquarters and ambulance stations; safe working...

Community Acquired Pneumonia (CAP) is the leading cause of infectious death and the third leading cause of death globally. Disease severity and outcomes are highly variable, dependent on host factors (such as age, smoking history, frailty and comorbidities), microbial factors (the causative organism) and what treatments are given. Clinical decision pathways are complex and despite guidelines, there is significant national variability in how guidelines are adhered to and patient outcomes.

For clinicians treating pneumonia in the hospital setting, care of these patients can be challenging. Key decisions include the type of antibiotics (oral or intravenous), the appropriate place of care (home, hospital or intensive care), and when it is appropriate to stop antibiotics. Decision support tools to help inform clinical management would be highly valuable to the clinical community.

This dataset is synthetic, formed from statistical modelling using real patient data, and represents a population with significant diversity in terms of patient demography, socio-economic status, CAP severity, treatments and outcomes. It can be used to develop code for deployment on real data, train data analysts and increase familiarity with this disease and its management.

PIONEER geography: The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix.

EHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal “My Health”. This synthetic dataset has been modelled to reflect data collected from this EHR.

Scope: A synthetic dataset which has been statistically modelled on all hospitalised patients admitted to UHB with Community Acquired Pneumonia. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care including timings, admissions, escalation of care to ITU, discharge outcomes, physiology readings (heart rate, blood pressure, AVPU score and others), blood results and drug prescribing and administration.

Available supplementary data: Matched synthetic controls; ambulance, OMOP data, real patient CAP data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.

This OMOP CDM is built from a flow of primary care data from Cheshire and Merseyside GPs who have signed the ICB Data Sharing Agreement for Population Health. Patients who have signalled that they wish to opt out of their records being shared for secondary uses (i.e. uses beyond Direct Patient Care) are removed as per national data opt-out policy. The source data is refreshed weekly (Sunday evenings) and the data set includes a long list of fields relating to: NHS number, allergies, medications issued, Repeat medications, Covid-19 status, Active and Past Problems, GP Results, Vitals & Measurements (height/weight, BP, physiological function result), Lifestyle factors (smoking and alcohol), GP encounters, vaccinations and immunisations, Contraindications, OTC and Prophylactic Therapy, Family History, Child Health, Diabetes Diagnosis, Chronic Disease Monitoring.

Background
The Commission for Health Improvement (CHI), in conjunction with the Department of Health (DH), appointed Aston University to develop and pilot a new national National Health Service (NHS) staff survey, commencing in 2003, and to establish an advice centre and web site to support that process. Administration of the programme was taken over by the Healthcare Commission in time for the 2004 series. On the 1st April 2009, the Care Quality Commission (CQC) was formed which replaced the Healthcare Commission (users should note that some of the surveys in the series conducted prior to this date will still be attributed to the Healthcare Commission). In 2011 the Department of Health took over management of the survey. Since 2013 NHS England (NHSE) have been in charge of the survey programme. Researchers at Aston University were responsible for the initial development of the survey questionnaire instrument, and for the setting up of the NHS National Staff Survey Advice Centre. From 2011, Picker Institute Europe took over from Aston University as survey contractors. All organisations concerned worked in partnership to consult widely with NHS staff about the content of the new national survey. The work was conducted under the guidance of a stakeholder group, which contained representatives from the staff side, CQC, DH, human resources directors, Strategic Health Authorities and the NHS workforce.

Aims and conduct of the survey
The purpose of the annual NHS staff survey is to collect staff views about working in their local NHS trust. The survey has been designed to replace trusts' own annual staff surveys, the DH '10 core questions', and the HC 'Clinical Governance Review' staff surveys. It is intended that this one annual survey will cover the needs of HC, DH and trusts. Thus, it provides information for deriving national performance measures (including star ratings) and to help the NHS, at national and local level, work towards the 'Improving Working Lives' standard. The design also incorporates questions relating to the 'Positively Diverse Programme'. Trusts will be able to use the findings to identify how their policies are working in practice. The survey enables organisations, for the first time, to benchmark themselves against other similar NHS organisations and the NHS as a whole, on a range of measures of staff satisfaction and opinion. From 2013, the NHS Staff Survey went out to all main trust types - social enterprises, clinical commissioning groups and clinical support units were able to opt themselves in to the survey. Organisations were allowed to conduct the survey electronically and to submit data for an entire census or extended sample of their organisation. Previously the sample was restricted to 850 staff.

The collection of data (i.e. the survey fieldwork) is conducted by a number of independent survey contractors (see documentation for individual survey information). The contractors are appointed directly by each NHS trust in England and are required to follow a set of detailed guidance notes supplied by the Advice Centre (see web site link above), which covers the methodology required for the survey. For example, this includes details on how to draw the random sample, the requirements for printing of questionnaires, letters to be sent to respondents, data entry and submission. At the end of the fieldwork, the data are then sent to the Advice Centre. From the data submitted, each participating NHS trust in England receives a benchmarked 'Feedback Report' from the Advice Centre, which also produces (on behalf of the Department of Health) a series of detailed spreadsheets which report details of each question covered in the survey for each participating trust in England, and also a 'Key Findings' summary report covering the survey findings at national level. Further information about the survey series and related publications are available from the Advice Centre web site (see link above).

Child Obesity and Excess Weight data from the National Child Measurement Programme (NCMP, published by Public Health England).

NCMP data is an annual survey of children attending state schools, which is the denominator for percentages. Figures are based on child residence postcode. Data is shown for Lincolnshire and Districts, Wards, and NHS Clinical Commissioning Group (CCG).

The data shows children at risk of obesity and excess weight (which includes overweight and obesity). It uses population monitoring criteria, not clinical assessments which might give lower prevalence rates. NCMP data covers state schools but does not include independent sector children, and some larger children may opt out.

The data is updated annually. Source: Public Health England (PHE) National Obesity Observatory.

The NHS Fetal Anomaly Ultrasound Screening Programme (FA2) data provides insights into the coverage and effectiveness of the fetal anomaly ultrasound scan conducted between 18 and 20 weeks of pregnancy. This data includes the percentage of eligible pregnant women who received the scan, which is designed to detect a range of fetal anomalies such as Down's syndrome, Edwards' syndrome, Patau's syndrome, and various physical conditions like spina bifida and congenital heart disease.

Rationale The FA2 data helps assess the programme's reach and identify areas for improvement, ensuring that expectant mothers receive timely and accurate information about their baby's health. This information is crucial for healthcare providers to monitor and enhance the quality of prenatal care services.

Definition of numerator The number of eligible pregnant women who received the fetal anomaly ultrasound scan between 18 and 20 weeks of pregnancy.

Definition of denominator The total number of eligible pregnant women who were offered the fetal anomaly ultrasound scan between 18 and 20 weeks of pregnancy.

Caveats

Eligibility Criteria: The data only includes pregnant women who meet specific eligibility criteria, such as those with a fetal crown rump length (CRL) measurement between 45.0mm and 84.0mm (11 weeks plus 2 days to 14 weeks plus 1 day of pregnancy). Women who fall outside these parameters are excluded. Exclusions: Certain groups are excluded from the data, such as women who miscarry, opt for termination, transfer out before testing, or have pregnancies of a higher order than twins. Technical Limitations: There may be instances where it is not technically possible to measure the nuchal translucency (NT), leading to exclusions from the data. Service Capacity: The capacity of ultrasound departments to accommodate women presenting later in pregnancy can affect the data. If the service cannot offer the combined test to women presenting between 13 weeks plus 1 day and 14 weeks plus 1 day, these women can be excluded. Informed Choice: The data includes women who decline the screening after being offered, which can impact the overall coverage rates.

The NHS Sickle Cell and Thalassaemia (SCT) Screening Programme aims to identify carriers of sickle cell disease and thalassaemia, as well as individuals affected by these conditions.

Rationale The rationale for the NHS Sickle Cell and Thalassaemia (SCT) Screening Programme is to identify carriers and individuals affected by these inherited blood disorders early in pregnancy. Early detection allows for informed decision-making by prospective parents and ensures timely medical intervention. Sickle cell disease and thalassaemia can lead to severe health complications, including chronic pain, anemia, and increased risk of infections. By screening pregnant women and, if necessary, their partners, the programme aims to provide crucial information about the risk of passing these conditions to their offspring. This proactive approach helps manage and mitigate potential health issues, improving outcomes for both mothers and babies.

Definition of numerator The number of pregnant women who have been screened for sickle cell and thalassaemia.

Definition of denominator The total number of pregnant women who are eligible for screening for sickle cell and thalassaemia.

Caveats

Eligibility Criteria: The data only includes pregnant women who meet specific eligibility criteria for screening. Exclusions: Certain groups may be excluded from the data, such as women who miscarry, opt for termination, or transfer out before testing. Informed Choice: The data includes women who decline the screening after being offered, which can impact the overall coverage rates. Technical Limitations: There may be instances where it is not technically possible to perform the screening, leading to exclusions from the data. Service Capacity: The capacity of healthcare providers to accommodate all eligible women can affect the data, especially if there are resource constraints. Data Accuracy: The accuracy of the data depends on the completeness and correctness of the information recorded by healthcare providers.

Abstract copyright UK Data Service and data collection copyright owner.

In 2003, the offer of screening for foetal abnormality and particularly Down’s syndrome became a routine part of antenatal care in the UK for the first time. The 2003 NICE antenatal care guidelines state that 'all pregnant women should be offered screening for Down’s syndrome with a policy that provides a minimum detection rate of 75% with a false-positive rate no greater than 3% by 2007', indicating a move to first trimester screening technologies which achieve this greater level of accuracy.

Thus the findings of this study of the only NHS site in England offering combined first trimester screening in a one-stop clinic setting are of particular relevance at this time and has provided the opportunity to look at the implications of an IHT (Innovative Health Technology) prior to wide-scale implementation in the UK. The study findings raise questions about the implications for non-directiveness and informed decision-making of the resulting routinisation of screening, and the shift from an ‘opt-in’ to an ‘opt-out’ service.

The implications of the introduction of a routine offer of screening for Down’s syndrome in the first trimester of pregnancy raises new issues for women and their partners, for the organisation and management of screening and for society. The development of prenatal screening technologies is a contested and politically charged arena with ethical and public policy considerations.

In the light of the above concerns, the study aimed to explore: