Good TREs work

Cheshire East Council projects

Access to Civil Registration Data
LAPH HES via NHS Digital Portal (partially via "system access")

490 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

Access to Civil Registration Data — DARS-NIC-44904-K0Y9V

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - not applicable for this dataset, No - deaths data flowing to Local Authorities does not require the application of patient opt outs, No - data flow is not identifiable, No - Birth data is not considered as personal confidential information - however when handling applications for the data we treat these data as identifiable, even though patient opt outs do not apply, Identifiable, Anonymised - ICO Code Compliant, No (Does not include the flow of confidential data, Statutory exemption to flow confidential data without consent)

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(5)(d)

Purposes: No (Local Authority)

Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive

When:DSA runs 2019-06-01 — 2020-05-31 2017.09 — 2024.11.

Access method: Ongoing, One-Off

Data-controller type: CHESHIRE EAST COUNCIL

Sublicensing allowed: No

Datasets:

Primary Care Mortality Database
Vital Statistics Service
ONS Births
Primary Care Mortality Data
Civil Registration - Births
Civil Registrations of Death

Objectives:

The ONS births and deaths data is of significant value to the Local Authority in enabling analysts to respond to local public health needs. Evaluations of births and deaths in their local area allows local authorities to perform the following:

a) Measuring the health, mortality or care needs of the population, for specific geographical area or population group;
b) Planning, evaluating or monitoring health and social care policies, services or interventions; and,
c) Protecting or improving the public health, including such subjects as the incidence of disease, the characteristics (e.g. age, gender, occupation) of persons with disease, the risk factors pertaining to sections of the population, investigating specific areas of local concern relating to the health of the local population, or the effectiveness of medical treatments.

The births and deaths data both contain identifiable data which is required when linking into other datasets to enhance and verify the statistics produced, or to investigate specific areas of local concern relating to the health of the local population, e.g. deaths data is used to produce suicide audits by linking into hospital / GP / social care data and births data can be linked into child care / social care systems when infant deaths are investigated usually as part of local “Safeguarding Children” projects.

Such local investigations will reflect local need and thus vary in relation to the specific local authority, but the detail below provides specific examples of such local investigations which provide evidence on why identifiable data is needed in order to carry out the purposes stated within a), b) and c) above.

Each Local Authority will only be permitted to process the data in the way outlined in this application. Processing outside the terms of this application will require a separate application as an amendment to this agreement

In relation to mortality data :

Suicide Audit – As part of on-going (or the introduction of) suicide audit processes identifiable information will be required to support this work. Such audits require specific identifiable fields, including postcode of usual residence and postcode of place of death (further refined using the place of death text) to analyse and investigate of deaths in public places to support work on accident prevention strategies and the identification of hotspots and locational characteristics for accidental harm and suicide. For example, exact postcode us used to calculate distance from home address to identify suicide hotspots which are a distance from place of resident as a further means of classifying risk. NHS number, date of death and date of registration fields are used when conducting local audits at the coroner’s office, to match their records with the death record in order to supplement information which is subsequently aggregated within the final internal report.

To expand on what is noted above, postcode of residence and place of death (further refined using the place of death text) is used for hotspot mapping and in particular is used to inform suicide prevention work through target hotspot areas of location types within the county and undertake specific preventative work. Pseudonymised data would be insufficient as lower super output areas or partial postcode) cover too large an area to identify exact locations and features or calculate distance from home, especially in more dispersed rural areas, where locations may be many miles apart. This granularity of data is required since the local authorities are where appropriate taking specific locally based action rather than just authority wide activity. The suicide audit process involves collecting information from services such as police, healthcare providers and GP practices of the factors involved in the suicide and NHS number, date of death and other identifiable data will be essential for doing this. As with the hotspot work this is about understanding risk, detecting local issues to inform evidence-based interventions addressing known local factors.

Accidental/Preventable Deaths – Postcode of usual residence and postcode of place of death (further refined using the place of death text) are used for the analysis and investigation of deaths in public places to support work the identification of hotspots and locational characteristics for accident – with identification of types of areas (e.g. parks, railway lines, pavements) as well as particular locations. This level of analysis enables preventative work to be targeted to high risk areas (both in terms of residence as well as occurrence). As a specific example relating to one Local Authority, it carried out work that identified a number of suicides at a particular railway location, and hence facilitated suicide prevention training with staff members at their local Railway Station.

In conjunction with postcode of usual residence and postcode of place of death, detailed analysis of cause of death allows the monitoring of patterns of preventable or amenable disease, particularly avoidable deaths including the major killers, i.e. circulatory, cancer and respiratory disease.

Seasonal monitoring of deaths – Date of death is used both to establish seasonal patterns of mortality (such as excess winter deaths) and the correlation of this with data on weather conditions and local health and social care system pressures, and in the case of any deaths going to coroner to track the length of time between death and registration.

In relation to local population health needs:

Bespoke geography analysis – The postcode also enables analysis by non-coterminous geographies such as highly trafficked roads so the Local Authority can complete aggregate analysis of areas with particular risk factors – for example to see if people living on main roads have high risks of respiratory disease than people who live on cul-de-sacs.

The postcode and place of death text also enables Local Authorities to identify locations of particular types such as care homes or other residential institutions, analysis of deaths by homes enables targeted prevention work (such as control of infection or falls prevention).

Further, bespoke geographies created by postcodes support the assessment of environmental risks to health. For example, a Local Authority may be required to investigate a number of residential streets which have been built on potentially contaminated ground to see if there are any unusual disease patterns. One specific Local Authority needed to identify deaths where the person was resident in particular streets, in the case of a previous cancer cluster possibly relating to chemicals in soil.

Postcodes are used to identify births along these roads to see if there are increased risks of low birth-weight or stillbirths.

Deprivation and inequalities – Postcode is also used to sum data to aggregate geographies that are not based on LSOAs, to facilitate partnership working and to look at small area clusters such as pockets of deprivation, poor quality housing and inequalities in healthcare provision which are all found to be smaller than an LSOA level, identifying the conditions contributing to the greatest levels of premature and preventable deaths, and identifying areas for further investigation.

Child deaths and stillbirths – Identifiable data is also required to provide any data needed to fulfil our duties for audit under the Child Overview Death Panel and other Safeguarding investigations – using NHS numbers to identify these cases and look for patterns, date of birth of mother/postcode of mother to investigate trends based on mother’s location or age.

Audit of medical professionals – there is a requirement for NHS number to facilitate clinical audits by medical professionals into unusual patterns of death; this is part of the Local Authority’s statutory duty to protect the health of the population from risks to Public Health, from both medical conditions and also from clinical practice. Some recent specific examples include :-
• An unusually high number of deaths from epilepsy were noted from the data, and these were audited against GP practice data having had access to identifiable data to identify records.
• GP practices raised concerns about health in their practices, having noticed clusters of cases that they request the Local Authority to investigate.
• Following the Shipman Enquiry recommendations, Local Authorities are required to investigate any concerns raised about clinical practitioners. This duty was given to PCTs in 2007, but information source is the PCMD and is part of the PH duty to provide analysis and evidence to CCGs.

Seasonal monitoring of births – A Local Authorities have a requirement for the inclusion of date of birth of child as it is used to monitor seasonal patterns of births. Postcode of usual residence of mother and postcode of place of birth of child are also used to establish and monitor distance from home to place of birth and monitor catchment areas for different providers for future service planning covering areas based on postcodes rather than LSOA. This will not include any data sharing with providers or other third parties.

Age of mother is required to investigate trends in both young mothers (to support teenage conception and Family Nurse Partnership programmes) and older mothers (to support service planning for higher risk pregnancies). This will not include any data sharing with providers or other third parties.

Yielded Benefits:

PHE Local Health and PHOF data have been used to develop a Cheshire East 'tartan rug' - a health profile for electoral wards; available to view at "https://www.mycongleton.org/wp-content/uploads/2016/12/Congleton-Constituency-Ward-profile-tartan-rug-Apr16-v2.pdf". This was used to highlight geographies and specific indicators that require intervention. This tool has clearly demonstrated to Councillors that there are specific issues in Crewe. The PCMD is now being used to drill down and understand whether there are specific conditions, age-groups or smaller geographies within Crewe that are leading to the residents experiencing inequalities in their health outcomes. Cheshire East are using the data to quantify what is needed to be done in terms of reduction in death numbers in order to reduce these inequalities and turn the indicators green on the tartan rug. Also the data has been used for calculating the impact on the areas LE. This is part of a large project with Intel being pulled from multiple sources, including community projects to understand what can make a difference. PCMD data has been used to support Suicide audit work. and also to support the writing of various JSNA sections including suicide, various cancers, Winter health.

Expected Benefits:

The projects are carried out in order to improve public health and will result in local adjustments to services to reduce mortality where possible and inform decisions and policies.

This data assists Local authorities in tailoring local solutions to local problems, and using all the levers at their disposal to improve health and reduce inequalities and it helps to create a 21st century local public health system, based on localism, democratic accountability and evidence as directed in the Health and Social Care act 2012.

Benefits of using births / deaths data

The PCMD is of great benefit to health and social care, and the use of it has led to considerable benefits to public health. The PCMD is used to identify patterns and trends in mortality rates, life expectancy and premature death, highlighting differences between geographic areas, age, sex and other socio-economic characteristics. It is also used specifically to identify health inequalities and differences between areas which is critical for the planning, distribution and targeting of health, care and public health services. It is used to set recommendations in the Annual Public Health Report, which inform the commissioning and coordination of public health services.

Further to preventable deaths use, premature deaths can be analysed, audits are undertaken to identify all those who died prematurely. This was used to look at the care pathways, develop new prevention programmes and implement positive change within primary care. Risk prevention for public health. This is covered by the statutory duty to provide a Public Health Advice Service.

It is used within the Joint Strategic Needs Assessment to identify priority communities in the Local Authority, to establish the impact of different risk factors and social determinants on mortality rates, and informs the identification of JSNA priorities for the Local Authority. The JSNA directly informs the priorities in the Joint Health and Wellbeing Strategy, which is produced by the Health and Wellbeing Board, and is directly reflected in the commissioning plans of health and care organisations locally.

As well as this strategic focus, the PCMD also informs specific actions, decisions and changes within the area covered by the Local Authority. An example of this is suicide prevention work, where PCMD data has aided the identification of suicide hotspots and risk factors which has informed the local suicide prevention strategy which has directed interventions and changes within the county. As the PCMD informs the Joint Strategic Needs Assessment, Health and Wellbeing Board and other multi-agency work, and has a direct relationship with commissioning plans and specific actions, the benefits are achieved collective across the local health and care economy through the Health and Wellbeing Board membership organisations (including health commissioners, social care, public health, council members, police and probation services, Healthwatch and other community representatives) and beyond. The benefit to the local population is that health, social care and public health services are tailored to the issues and areas of greatest needs and are focused on reducing health inequalities, with specific reference to life expectancy and mortality rates. Reductions in premature mortality rates are influenced by the design and targeting of local services to address the differences highlighted through an analysis of the PCMD. Specific interventions around suicide and accident prevention use information from the PCMD to identify specific hotspots and risk factors locally, which in turn are used to protect the public health.

This data assists local authorities in tailoring local solutions to local problems, and using all the levers at their disposal to improve health and reduce inequalities and it helps to create a 21st century local public health system, based on localism, democratic accountability and evidence as directed in the Health and Social Care act 2012.

Specific steps taken to protect the health of the local population using births and deaths data within a Local Authority will include the setting of priorities within the Annual Public Health Report, the Joint Health and Wellbeing Strategy and the commissioning plans of local health and care organisations. These strategic documents are underpinned by an analysis of births and mortality data including local, regional and national variations for the purposes of identifying priority areas, highlighting where health inequalities are greatest, identifying the conditions contributing to the greatest levels of premature and preventable deaths, and identifying areas for further investigation. The health of the local population is also protected through the monitoring of monthly trends in mortality rates and birth rates to identifying any emerging trends or sudden increases. The PCMD is also vital to facilitate the local investigation of mortality rates for individual GP practices (consistent with the recommendations of the Shipman Inquiry) and to investigate differences between geographic areas as required. Mortality and births data is also used to inform the location of services and social marketing activities to address the areas of greatest need within the county.

Health protection projects using births and death data include the monthly monitoring of deaths from Mesothelioma, drug-related deaths, and alcohol-related deaths; the suicide audit and suicide prevention task group; the monitoring of deaths from infectious and vaccine preventable diseases; the investigation of outcomes of healthcare associated infections; the monitoring of winter deaths to identify pressures on care services; and the monitoring of child deaths for the local safeguarding children board.

Statistical outputs using births and mortality data include local breakdowns of mortality rates by area, deprivation, age sex and CCG locality (preventable deaths, circulatory disease, cancer and suicide) for Health and Wellbeing Board and Public Health outcomes reports; birth rates, distribution of births by location/setting and life expectancy for JSNA community profiles; detailed analyses of overall and condition-specific mortality rates, life expectancy, stillbirths, births by maternal age, low birthweights, abortions for the Annual Public Health Report; population projections for non-standard geographic areas (including new town and development areas); and the analysis of birth rates, birth weight, stillbirths and mortality rates from specific conditions for service areas and health needs assessments as required.

Outputs:

A mixture of regular annual projects and ad hoc projects triggered by local conditions will require the use of births and deaths data that will result in published summary statistics for public health projects, and these may be used internally or externally with partners in the project.

Typical uses of deaths data are for the following:

a) Joint Strategic Needs Assessments (JSNAs);
b) Joint Health and Wellbeing Strategies;
c) the annual report of the Director of Public Health;
d) reports commissioned by the Health and Wellbeing Board;
e) public health and wider Local Authority health and wellbeing commissioning strategies and plans;
f) public health advice to NHS commissioners;
g) local health profiles;
h) health impact assessments
i) Suicide audits (this specifically requires NHS number)
j) End of life care projects
k) Abdominal Aortic Aneurysm (AAA) screening programme
l) responses to internal and external requests for information and intelligence on the health and wellbeing of the population.

Typical uses of births data are for the following:

a) Joint Strategic Needs Assessments (JSNAs);
b) Joint Health and Wellbeing Strategies;
c) the annual report of the Director of Public Health;
d) reports commissioned by the Health and Wellbeing Board;
e) public health and wider Local Authority health and wellbeing commissioning strategies and plans;
f) public health advice to NHS commissioners;
g) local health profiles;
h) health impact assessments
i) responses to internal and external requests for information and intelligence on the health and wellbeing of the population.

The specific content and target dates for these outputs will be for the Local Authority to determine, although it is required to comply with national guidance published by the Department of Health, Public Health England and others as appropriate, for example on the timetable for publishing refreshed JSNAs.

All outputs will be of aggregated data (with small numbers suppressed) as per the ONS Disclosure Guidance.

Processing:

Deaths data

The PCMD system holds mortality data which is made available, via an online system, to qualifying applicant organisations continuously for a year at a time. Once access is granted the approved users may process the data to produce statistical output for public health purposes, this may be for internal review or summarised to an anonymised level for publication. The standard applied for this is the ONS Disclosure control guidance for birth and death statistics. Link: http://www.ons.gov.uk/ons/guide-method/best-practice/disclosure-control-policy-for-birth-and-death-statistics/index.html

Births data

The births data for each defined local authority is distributed to the LA each quarter by secure e-mail and an annual refresh of the births data containing any required updates is also supplied by secure e-mail. Approved users may process the data to produce statistical output for public health purposes, this may be for internal review or summarised to an anonymised level for publication. The standard applied for this is the ONS Disclosure control guidance for birth and death statistics. Link: http://www.ons.gov.uk/ons/guide-method/best-practice/disclosure-control-policy-for-birth-and-death-statistics/index.html

Various extracts from the births and deaths data will be taken for relevant time periods and localities to enhance and inform public health projects for the local area such as:
End of life projects, epidemiology, local mortality variations and local GP mortality variations.

The processing will vary depending on the precise nature of the project, but will align with the public health statutory function. Access to the data is provided only to the named applicants within the Local Authority only, and will only be used for the health purposes outlined above. The data will only be processed by the aforementioned Local Authority employees in fulfilment of their public health function, and will not be transferred, shared, or otherwise made available to any third party, including any organisations processing data on behalf of the Local Authority or in connection with their legal function. Such organisations may include Commissioning Support Units, Data Services for Commissioners Regional Offices, any organisation for the purposes of health research, or any Business Intelligence company providing analysis and intelligence services (whether under formal contract or not).

Conditions of supply and controls on use

The Director of Public Health will be the Information Asset Owner for the births and deaths data and be responsible on behalf of the Local Authority to NHS Digital for ensuring that the data supplied is only used in fulfillment of the approved public health purposes as set out in this agreement. The Local Authority confirms that the Director of Public Health is a contracted employee to the permanent role within the Local Authority, accountable to the Chief Executive.

The application process also requires a signed ONS Declaration of Use form for each person who is to access the data for their Local Authority. Data must be processed according to the terms in this Agreement. Data must only be used for public health statistical purposes and not used for administrative and other activities such as list cleaning.

This data may only be linked to other data with explicit permission from ONS/NHS Digital, and only as described in this Agreement.

Data cannot be shared with any third party who is not identified in this Agreement at anything other than an aggregated level (with small numbers suppressed) as per the ONS Disclosure Guidance, and where stated within this agreement.

For deaths data:
Log-in details are provided to approved users only to access the Primary Care Mortality Database (PCMD). This is managed by the NHS AIS Exeter team. Users are able to view a time series of deaths data for their Local Authority only from this system.

For births data:
Data is to be disseminated by NHS Digital via secure email to users using an nhs.net or a .gcsx.gov.uk email address. There are 4 quarterly datasets disseminated for any given year plus an annual dataset.

For both births and deaths data (Vital Statistics reports):

An annual set of Vital Statistics reports aggregated at national and local level are produced from the births and deaths data. This primarily covers a combined set of fields from the births and deaths data with some fields derived from using the births and deaths data. These data tables have no suppression applied as users receive record level births and deaths data via this application. These tables are disseminated by NHS Digital via secure email to users via either an nhs.net or a .gcsx.gov.uk email address.

LAPH HES via NHS Digital Portal — DARS-NIC-00747-G8G0Z

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant (Does not include the flow of confidential data)

Legal basis: 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 - 'Other dissemination of information', Health and Social Care Act 2012 s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(b)(ii), Health and Social Care Act 2012 s261(2)(a)