Good TREs work

East Sussex County Council projects

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

Access to Civil Registration Deaths – Local Authority Collaborative Suicide Prevention Strategy — DARS-NIC-617755-B4F1L

Type of data: information not disclosed for TRE projects

Opt outs honoured: Identifiable (Statutory exemption to flow confidential data without consent)

Legal basis: Health and Social Care Act 2012 - s261(5)(d); Other-Regulation 3 of The Health Service (Control of Patient Information) Regulations 2002

Purposes: No (Local Authority)

Sensitive: Sensitive

When:DSA runs 2024-07-08 — 2027-07-07

Access method: Ongoing

Data-controller type: BRIGHTON AND HOVE CITY COUNCIL, EAST SUSSEX COUNTY COUNCIL, WEST SUSSEX COUNTY COUNCIL

Sublicensing allowed: No

Datasets:

  1. Civil Registrations of Death
  2. Primary Care Mortality Data

Objectives:

Collaborative Suicide Prevention Strategy
Suicide presents a significant risk to public health within Sussex. The UK Government sets out the need for developing and improving the support provided by local public services in helping to reduce the number of suicides nationally. The World Health Organisation highlights suicide as a major public health risk, accounting for one in 100 of all deaths globally, estimating that for every suicide there are 20 non-fatal suicide attempts. Every death by suicide is an individual tragedy and a cause of huge distress to friends, families, and communities. For every one suicide, it is estimated that there can be up to 135 people significantly impacted. For any one year, approximately 24,000 people in Sussex were affected by suicide. Within Sussex, the number of people who have enduring and in many cases a life-long negative impact from suicide is substantial.

The Local Authority Teams at East Sussex County Council (ESCC), Brighton & Hove City Council (BHCC) and West Sussex County Council (WSCC) are working collaboratively on a suicide prevention strategy. The councils would like to receive relevant PCMD data relating to deaths by suicide for all three local authorities to support further analyses required by the programme. This would be an on-going piece of work to understand and monitor the situation in Sussex, identify trends and further insights that will inform work to reduce the risk of suicide in the population. This analysis will look at places of death, methods of suicide, age, sex, area of residence (including persons living outside of Sussex who die by suicide within Sussex) and other socio-demographic factors such as area deprivation and employment/socio-economic groupings. The deaths data is of significant value to the Local Authorities in enabling analysts to respond to local public health needs. Evaluations of deaths in their local area allows local authorities to perform the following:

a) Measuring the health mortality or care needs of the population of Sussex,
b) Planning, evaluating or monitoring suicide prevention care policies, services or interventions; and,
c) Protecting or improving the public health, 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 deaths data contains 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, as in the production of suicide audits by linking into hospital / GP / social care data. 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.

The data controllers will only be permitted to process the data in the way outlined in this application.

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 suicide prevention strategies and the identification of hotspots and locational characteristics for suicide. For example, exact postcode is 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.

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 suicide– 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.

Legal Basis for Processing Data:

Article 6(1)(e) - (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller)

Local Authorities
Local Authorities have a legal responsibility under Section (1)(2)(3)(4)(5)(6)(7) of the Care Act 2014 to conduct tasks that are in the public interest to:
(1) Promoting individual well-being
(2) Preventing needs for care and support
(3) Promoting integration of care and support with health services etc.
(4) Providing information and advice
(5) Promoting diversity and quality in provision of services
(6) Co-operating generally
(7) Co-operating in specific cases
(8) Duty to meet needs for care and support

The task(s) are necessary (but are by no means an exhaustive list), but provides an indication of the many tasks required under Part 1 of the Care Act 2014 as the council has an obligation to the public to deliver services that are a necessity to the local population - from whom funding is provided to deliver these services/tasks in the form of Council Tax.

Local Authorities have a duty under Section 74 (1)(2)(3)(4) of the NHS Act 2006 to supply goods and services:
(1) In the Local Authorities (Goods and Services) Act 1970 (c. 39) the expression “public body” includes—
(a) any Strategic Health Authority, Special Health Authority or Primary Care Trust, and
(b) so far as relates to his functions under this Act, the Secretary of State.
(2) Subsection (1) has effect as if made by an order under section 1(5) of the Local Authorities (Goods and Services) Act 1970 and may be varied or revoked by such an order.
(3) Each local authority must make services available to each NHS body acting in its area, so far as is reasonably necessary and practicable to enable the NHS body to discharge its functions under this Act.
(4) “Services” means the services of persons employed by the local authority for the purposes of its functions under the Local Authority Social Services Act 1970 (c. 42).

Article 9(2)(h)
(processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3)

Article 9(3)
(Personal data referred to in paragraph 1 may be processed for the purposes referred to in point (h) of paragraph 2 when those data are processed by or under the responsibility of a professional subject to the obligation of professional secrecy under Union or Member State law or rules established by national competent bodies or by another person also subject to an obligation of secrecy under Union or Member State law or rules established by national competent bodies.)

Data Protection Act 2018

Section 11 - Special categories of personal data etc: supplementary
(1)For the purposes of Article 9(2)(h) of the GDPR (processing for health or social care purposes etc), the circumstances in which the processing of personal data is carried out subject to the conditions and safeguards referred to in Article 9(3) of the GDPR (obligation of secrecy) include circumstances in which it is carried out—
(a)by or under the responsibility of a health professional or a social work professional, or
(b)by another person who in the circumstances owes a duty of confidentiality under an enactment or rule of law.

Legal basis for Processing Confidential Data:

The Health Service (Control of Patient Information) Regulations 2002 - Regulation 3:
(1) confidential patient information may be processed with a view to:
(a) diagnosing communicable diseases and other risks to public health;
(b) recognising trends in such diseases and risks;
(c) controlling and preventing the spread of such diseases and risks;

The Local Authorities have a Caldicott Guardian/Clinical Director. The Caldicott Guardian/Clinical Director is a health professional and acts as a guardian responsible for safeguarding the confidentiality of patient information in-line with the specific requirement of Regulation 7(2) of COPI

Patient and Public Engagement
The Sussex Suicide Prevention Strategy has been developed with support from place-based suicide prevention groups and representatives for the Community and Voluntary sector. Representatives from these groups have been approached for their view and support of the pan-Sussex strategy. The Strategy and Action plan received positive support.

In 2022, prior to the publication of the latest national strategy, an engagement exercise took place with key stakeholders from the Sussex Suicide Prevention partnership, giving partners the opportunity to shape the ‘Statements of Intent’ for national Action Areas. The approach of this strategy is based on the action areas of the 2023 national strategy.

The Strategy plans to expand on engagement with local organisations, the strategy will look to engage National Suicide Prevention Alliance (NSPA), aiming to support local organisations and develop a Sussex lived experience local network.

Expected Benefits:

The suicide prevention strategy is implemented in order to improve public health and will result in local adjustments to services to reduce mortality where possible and inform decisions and policies.

Benefits of using deaths data:

As well as this strategic focus, the data informs specific actions, decisions and changes within the area covered by the Local Authority. Within suicide prevention work, the 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 data 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 data. Specific interventions around suicide and accident prevention use information from the data to identify specific hotspots and risk factors locally, which in turn are used to protect the public health. The Collaborative Suicide Prevention Strategy is hoped to maximise the effectiveness of these benefits for individuals across all three Local Authority geographies.

The Collaborative Suicide Prevention Strategy seeks to implement improvements in the following areas aimed at reducing instances of suicide within the area:

- Improving data and evidence to ensure that effective, evidence-informed and timely interventions can be developed and adapted.
- Support the Local Authorities ability to deliver tailored, targeted support to priority groups, including those at higher risk of suicide. Addressing common risk factors linked to suicide at a population level to provide early intervention and tailored support.
- Identification and reductio of access to means and methods of suicide where this is appropriate and necessary as an intervention to prevent suicides.
- Improving the provision of effective bereavement support to those affected by suicide.

Specific steps taken to protect the health of the local population using 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 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 to identifying any emerging trends or sudden increases. The data 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 data is also used to inform the location of services and social marketing activities to address the areas of greatest need within the county.

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

Outputs:

Typical outputs expected of the suicide prevention strategy are expected to contribute to 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 wellbeing strategies and plans;
f) public health advice to NHS commissioners;
i) Suicide audits (this specifically requires NHS number)
l) 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).

Processing:

UPDATE TO DEATH DATA PROVISIONING

Due to the planned decommissioning of the Primary Care Mortality Dataset (PCMD) by NHS England during the period of this Data Sharing Agreement, the provision of the PCMD data will be replaced by Civil Registrations of Death Dataset. The data processed will remain the same and after a full refresh of all the historic data has been provided in the new format, the Local Authorities will be required to destroy the previously supplied PCMD Data.

No Data will be flowing from NHS England to the Data Controllers under this agreement. The Data processed for the purposes outlined in this agreement will be data held by the Data Controllers, which has been disseminated under the Data Sharing Agreements listed below:

DARS-NIC-50105-C8P5V - East Sussex County Council
DARS-NIC-37123-L4W1M - West Sussex County Council
DARS-NIC-44378-T7F0X - Brighton and Hove City Council

This agreement will only remain active while the Data Sharing Agreements listed above are in place.

A minimum dataset will be agreed between the three local authorities for the purposes of the Suicide Prevention Strategy to minimise the data being transferred. Once agreed, the Local Authorities will transfer the data to an environment hosted by ESCC. The data would be transferred from via gov.uk email within an encrypted and password protected data file. The Local Authorities will appoint analysts to process the data hosted by ESCC within the Public Health Intelligence Team. Users may process the data to produce statistical output for purpose outlined in this agreement, this may be for internal review or summarised as anonymous data for publication.

Data will be stored on a confidential file server only to be accessed by appointed employees of the Data Controllers. Analysis would be undertaken within this secure area and any outputs shared would adhere to the data disclosure rules clearly set out by this data sharing agreement for the handling of this mortality data i.e., data suppression on small numbers etc. Various extracts from the deaths data will be taken for relevant time periods and localities to enhance and inform the collaborative work.

The data will only be processed by the aforementioned Local Authority employees in fulfilment of this suicide audit 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 Authorities 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). 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) and where stated within this agreement.

Conditions of supply and controls on use

The Director of Public Health within each Local Authority will be the Information Asset Owners for the deaths data and be responsible on behalf their employing Local Authority to NHS England for ensuring that the data supplied is only used in fulfilment of the approved public health purposes as set out in this agreement. The Local Authorities confirm that the Director of Public Health is a contracted employee to the permanent role within the Local Authority, accountable to the Chief Executive.

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 NHS England, and only as described in this Agreement.

LAPH HES via NHS Digital Portal — DARS-NIC-48804-N2F8H

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)

Purposes: No (Local Authority)

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

When:DSA runs 2019-04-01 — 2020-03-31 2018.03 — 2024.09.

Access method: Ongoing, System access, System Access
(System access exclusively means data was not disseminated, but was accessed under supervision on NHS Digital's systems)

Data-controller type: EAST SUSSEX COUNTY COUNCIL

Sublicensing allowed: No

Datasets:

  1. Hospital Episode Statistics Admitted Patient Care
  2. Hospital Episode Statistics Accident and Emergency
  3. Hospital Episode Statistics Outpatients
  4. Hospital Episode Statistics Critical Care
  5. Emergency Care Data Set (ECDS)
  6. Hospital Episode Statistics Accident and Emergency (HES A and E)
  7. Hospital Episode Statistics Admitted Patient Care (HES APC)
  8. Hospital Episode Statistics Critical Care (HES Critical Care)
  9. Hospital Episode Statistics Outpatients (HES OP)

Objectives:

The Health Episode Statistics (HES) Data accessed through the HES Data Interrogation System (HDIS) will be used by the Local Authorities in fulfilment of its public health function, specifically to support and improve:

1. the local responsiveness, targeting and value for money of commissioned public health services;
2. the statutory ‘core offer’ public health advice and support provided to local NHS commissioners;
3. the local specificity and relevance of the Joint Strategic Needs Assessments and Health and Wellbeing Strategies produced in collaboration with NHS and voluntary sector partners on the Health and Wellbeing Board;
4. the local focus, responsiveness and timeliness of health impact assessments; and, among other benefits
5. the capability of the local public health intelligence service to undertake comparative longitudinal analyses of patterns of and variations in:

a) the incidence and prevalence of disease and risks to public health;
b) demand for and access to treatment and preventative care services;
c) variations in health outcomes between groups in the population;
d) the level of integration between local health and care services; and
e) the local associations between causal risk factors and health status and outcomes.

The main statutory duties and wider public health responsibilities supporting these processing objectives are as follows:

1. Statutory public health duties that the data will be used to support

a) Duty to improve public health: Analyses of the data will be used to support the duty of the Local Authority under Section 12 of the Health and Social Care Act 2012 to take appropriate steps to improve the health of the population, for example by providing information and advice, services and facilities, and incentives and assistance to encourage and enable people to lead healthier lives;
b) Duty to support Health and Wellbeing Boards: Analyses of the data will be used to support the duty of the Local Authority and the Clinical Commissioning Group (CCG)-led Health and Wellbeing Board under Section 194 of the 2012 Act to improve health and wellbeing, reduce health inequalities, and promote the integration of health and care services; the data will also be used to support the statutory duty of Health and Wellbeing Boards under Section 206 of the 2012 Act to undertake Pharmaceutical Needs Assessments;
c) Duty to produce Joint Strategic Needs Assessments (JSNAs) and Joint Health and Wellbeing Strategies (JHWBs): Analyses of the data will be used to support the duty of the Local Authority under Sections 192 and 193 of the 2012 Act to consult on and publish JSNAs and JHWSs that assess the current and future health and wellbeing needs of the local population;
d) Duty to commission specific public health services: Analyses of the data will be used to support the Local Authority to discharge its duty under the Local Authorities Regulations 2013 to plan and provide NHS Health Check assessments, the National Child Measurement Programme, and open access sexual health services;
e) Duty to provide public health advice to NHS commissioners: Analyses of the data will be used by Local Authorities to discharge its duty under the 2013 Regulations to provide a public health advice service to NHS commissioners;
f) Duty to publish an annual public health report: Analyses of the data will be used by Directors of Public Health to support their duty to prepare and publish an annual report on the health of the local population under Section 31 the 2012 Act;
g) Public Health responses on behalf of the Local Authority to licensing applications and other statutory Local Authority functions requiring public health input: Analyses of the data will be used by the Director of Public Health to support their duty under Part 3 of the National Health Services Act 2006 (as amended by Section 30 of the Health and Social Care Act 2012) to provide the Local Authority’s public health response (as the responsible authority under the Licensing Act 2003, as amended by the Health and Social Care Act 2012 Schedule 5 – Part 1) to licensing applications.

2. Wider public health responsibilities supported by analysis of the data

a) Health impact assessments and equity audits: Analyses of the data will be used to assess the potential impacts on health and the wider social economic and environmental determinants of health of Local Authority strategic plans, policies and services;
b) Local health profiles: Analyses of the data will be used to support the production of locally-commissioned health profiles to improve understand of the health priorities of local areas and guide strategic commissioning plans by focusing, for example, on:
i. bespoke local geographies (based on the non-standard aggregation of LSOAs);
ii. specific demographic, geographic, ethnic and socio-economic groups in the population;
iii. inequalities in health status, access to treatment and treatment outcomes;
c) Surveillance of trends in health status and health outcomes: Analyses of the data will be used for the longitudinal monitoring of trends in the incidence, prevalence, treatment and outcomes for a wide range of diseases and other risks to public health;
d) Responsive and timely local health intelligence service: Analyses of the data will be used to respond to ad hoc internal and external requests for information and intelligence on the health status and outcomes of the local population generated and received by the Director of Public Health and their team.

These lists of the statutory duties and wider public health responsibilities of the Local Authority are not exhaustive but set the broad parameters for how the data will be used by the Local Authority to help improve and protect public health, and reduce health inequalities. All such use would be in fulfilment of the public health function of the Local Authority.

No sensitive data can be accessed through the HDIS. The data provided would include, the standard non-sensitive HES fields, and a common (across all Local Authorities) pseudoHESID to enable admissions to be linked over time.

Yielded Benefits:

This was the first year East Sussex County Council has had access to HES data and, compared to local SUS data feeds used in the past, East Sussex has benefited from the higher data quality and the ability to compare local data with other areas including benchmark areas (such as England and the South East). Updated East Sussex JSNA resources with the most current hospital attendance and admissions data for a range of conditions of local importance at relevant local geographies. This ensures commissioners and providers have the latest relevant information to enable them to focus their plans on improving health outcomes and reducing health inequalities. Used HES data to generate indicators and trend data underpinning the 2017/18 Annual Report of the Director of Public Health. The report focused on the state of child health in East Sussex which these data highlighted. Analysis of usage of Cardiology services at main local hospitals/NHS trusts enabling local providers to understand service usage in the local population and thus inform their transformation plans.

Expected Benefits:

Access to the data will enable the Local Authority to undertake locally-focused and locally-responsive analyses of health status and health outcomes. For example, the data will be used to produce analyses of health inequalities for non-standard geographies and for specific social or ethnic groups in the local population to help ensure that the health challenges facing the local population – particularly the most disadvantaged – have been identified and responded to appropriately by the Local Authority and its partners.

It is recognised that in fulfilling its public health duties using HES data, the Local Authority will deliver significant benefits. The Local Authority therefore commits in any renewal request to providing additional detail on benefits that relate to their local use of the data.     

Outputs:

The results of the analyses of the data will be used by the Local Authority to support the discharge of its statutory duties in relation to public health, and wider public health responsibilities. Outputs will include (but not be limited to) the routine and ad hoc production of:

a) Joint Strategic Needs Assessments;
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) responses to licensing applications and other statutory Local Authority functions requiring public health input;
h) local health profiles;
i) health impact assessments and equity audits; and, among other outputs
j) responses to internal and external requests for information and intelligence on the health and wellbeing of the population.

The specific content of 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 shared outside of the Public Health Team will be of aggregated data with small numbers suppressed in line with the HES Analysis Guide.

Processing:

Access to the Pseudonymised HES will enable the Local Authority to undertake a wide range of locally-determined and locally-specific analyses to support the effective and efficient discharge of its statutory duties in relation to public health, and wider public health responsibilities.

This application/agreement is for online access to the record level HES database via the HDIS2 system. The system is hosted and audited by NHS Digital meaning that large transfers of data to on-site servers is reduced and NHS Digital has the ability to audit the use and access to the data.

HDIS is accessed via a two-factor secure authentication method to approved users who are in receipt of an encryption token ID. Users have to attend training before the account is set up and users are only permitted to access the datasets that are agreed within this agreement. Users log onto the HDIS system and are presented with a SAS software application called Enterprise Guide which presents the users with a list of available data sets and available reference data tables so that they can return appropriate descriptions to the coded data.

The access and use of the system is fully auditable and all users have to comply with the use of the data as specified in this agreement. The software tool also provides users with the ability to perform full data minimisation and filtering of the HES data as part of processing activities. Users are not permitted to upload data into the system.

Users of HDIS are able to produce outputs from the system in a number of formats. The system has the ability to be able to produce small row count extracts for local analysis in Excel or other local analysis software. Users are also able to produce tabulations, aggregations, reports, charts, graphs and statistical outputs for viewing on screen or export to a local system.

Any record level data extracted from the system will not be processed outside of the Public Health team. Only registered HDIS users will have access to record level data downloaded from the HDIS system. Following completion of the analysis the record level data will be securely destroyed.
Access to the data is provided to the Local Authority only, and will only be used for the public health purposes outlined above. The data will only be processed by 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).

The Local Authority will use the data to produce a range of quantitative measures (counts, crude and standardised rates and ratios) that will form the basis for a range of statistical analyses of the fields contained in the supplied data. Typical uses will include:

1. Analyses of disease incidence, prevalence and trends: The age, sex, LSOA, ethnic group, Indices of Deprivation and diagnosis fields typically will be used to produce directly standardised coronary heart disease admission rates for the Local Authority, and for appropriate benchmark and comparator areas. Confidence intervals will then be produced for these rates, and the rates analysed using statistical process control methods, to determine whether there are any significant variations in the prevalence of heart disease with the Local Authority. The data will also be used to analyse changes over time in the prevalence of heart disease. The results of these analyses will then be used to inform the production of local health profiles, JSNAs and JHWSs; support the ‘core offer’ public health advice provided by the Director of Public Health to NHS commissioners; and advise any enquiries into health inequalities requested by the Health and Wellbeing Board.

2. Analyses of hospital admission rates: The data will also be used, for example, to produce comparative and longitudinal hospital admission rates among children and young people, particularly for injury and self-harm, to support the overarching responsibility of the Local Authority to safeguard and promote the health and welfare of all children and young people under the 1989 and 2004 Children Acts. Statistics based on these analyses will be used by the Director of Public Health to advise the Director of Children’s Services and Lead Member for Children’s Services, and inform and guide the provision of safeguarding services by the Local Authority.

Conditions of supply and controls on use

In addition to those outlined elsewhere within this application, the Local Authorities will:
1. only use the HES data for the purposes as outlined in this agreement;
2. comply with the requirements of NHS Digital Code of Practice on Confidential Information, the Caldicott Principles and other relevant statutory requirements and guidance to protect confidentiality;
3. not attempt any record-level linkage of HES data with other data sets held by the Local Authority, or attempt to identify any individuals from the HES data;
4. not transfer and disseminate record-level HES data to anyone outside the Local Authority;
5. not publish the results of any analyses of the HES data unless safely de-identified in line with the anonymisation standard; and
6. comply with the guidelines set out in the HES Analysis Guide;
7. ensure role-based control access is in place to manage access to the HES data within the Local Authority.

The Director of Public Health will be the Information Asset Owner for the HES data and be responsible on behalf of the Local Authority to NHS Digital for ensuring that the data is only used in fulfilment of the approved public health purposes as set out in this application. 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.

Data retention
A maximum of ten full years data will be accessed through the HDIS at any point, such that as each new data year is available, access to the oldest year will be suppressed i.e. at any point in time only ten historic years of data plus the current year is available. The Local Authority will securely destroy any record level data downloaded for the year’s data within six weeks of receiving access to the latest annual dataset and provide a data destruction certificate to NHS Digital.

The historic data will be used by the Local Authority in fulfilment of its public health function, and specifically to:
a) recognise and monitor trends in disease incidence and prevalence and other risks to public health;
b) recognise and monitor trends in treatment patterns, particularly hospital readmissions, and outcomes;
c) recognise and monitor trends in access to treatment and care between demographic, geographic, ethnic and socio-economic groups in the population; and
d) recognise and monitor trends in the association between the wider social, economic and environmental determinants of health and health outcomes
for the purpose of informing the planning, commissioning and provision of effective health and care services at a local level.

Access to Civil Registration Data — DARS-NIC-50105-C8P5V

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 — 2024.09.

Access method: Ongoing, One-Off

Data-controller type: EAST SUSSEX COUNTY COUNCIL

Sublicensing allowed: No

Datasets:

  1. Primary Care Mortality Database
  2. Vital Statistics Service
  3. ONS Births
  4. Primary Care Mortality Data
  5. Civil Registration - Births
  6. 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 during 2017-2018. 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:

During 2017/18: PCMD and births data have been used in the annual refresh of East Sussex JSNAA births and deaths rate indicators, at various levels of geography from ward to district/borough to county, and from GP practice to locality to CCG. In turn a range of resources at these geographies, including area summaries and profiles, have been produced and these facilitate the identification of local areas with substantially/significantly worse rates than East Sussex. The relevant Locality Area Summary was presented to each of the management teams for the 10 newly formed East Sussex localities, providing each team with valuable insights into the state of health/wellbeing in the locality. The area summary and associated indicators provided them with a wide-ranging overview, a strong steer for priority setting, plus a baseline against which to measure future outcomes. Locality-level mortality indicators (derived for the East Sussex JSNAA) revealed a relatively low life expectancy at age 75 in Uckfield Locality, despite it being one of the least deprived of all East Sussex localities. People in care homes tend to be frailer than the general population of equivalent age, and studies have shown that the age-specific death rates in nursing homes are higher than those found in the general population. To follow up on the possibility that high care home occupancy was the reason for the low life expectancy at age 75 in this locality, PCMD data was analysed further. It was used to determine what percentage of deaths occurred in care homes in each East Sussex locality. The percentage was found to be higher in Uckfield Locality than in any of the other localities in East Sussex, strongly implicating high care home occupancy as the reason for the low life expectancy at age 75. Analysis of PCMD mortality data played a pivotal role in the latest (2017/18) DPH annual report for East Sussex, entitled The State of Child Health in East Sussex. For example it highlighted that infant mortality was significantly higher in the most deprived quintile of East Sussex wards than in the least. East Sussex has high rates of deaths on the road compared to England. Analysis of the causes of death in 15-19 year olds in East Sussex revealed that about a quarter of these deaths were due to land transport accidents. Such deaths should be amenable to prevention and this information has been fed into the Road Safety Programme aimed at reducing those killed or seriously injured on East Sussex roads. To provide valuable contextual information for the new Medical Examiner service, PCMD data on deaths occurring in East Sussex, and deaths of East Sussex residents (irrespective of whether the death occurred in county) registered in 2014-2016, were summarised by broad age group, cause of death (ICD-10 chapter) and place of death categories (home, hospital, etc.). The PCMD data has been used to analyse the trend in the annual numbers of suicides at Beachy Head by East Sussex residents and non-East Sussex residents, revealing that over the last 6-7 years the number of suicides of East Sussex residents has remained fairly constant (an average of 5 per year) but numbers of suicides of non-residents has increased from an average of 20 per year to 25 per year. The national/international and growing scale of the problem has been flagged with both local and national suicide prevention groups//leads. When concerns were raised by a local hospital trust concerning ONS published rates of stillbirths for a local authority in East Sussex, the births data was used to determine how many residents of that LA delivered at the trust. This showed that not all stillbirths in the ONS statistics related to the local trust.

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 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.