Bradford Teaching Hospitals NHS Foundation Trust - Research

To use pseudonymised deaths data to provide research to support the commissioning of health services. The data is analysed so that health care provision can be planned to support the needs of the population within the Trusts Integrated Care System (ICS) area.

As part of the Health and Social Care Act 2022 and the NHS England long term plan towards more integrated care, NHS Trusts will have representation on the Integrated Care Systems (ICS) commissioning board and therefore need access to data in order to fully contribute and support.

There is an urgent priority for place-based commissioners and leaders to have an understanding of inequalities in access and outcomes for individuals in the last year of life. This work will also be of direct relevance to the ICS, as understanding inequalities and factors driving them will help support strategic plans to address inequalities - a key ICS priority. Given the urgent need to understand the inequalities from a commissioning and place-based perspective, they want to focus the project on these needs without delay. Findings from this service development piece of work that are of interested to wider stakeholders, such as NHSEI will be shared through established palliative and end of life care NHSEI networks and shared through reports.

Connected Yorkshire is one of the identified Connected Health Cities data linkage programmes across health and social care to improve patient pathways that is hosted by Bradford Teaching Hospitals NHS Foundation Trust (BTHFT).

The aim of the programme is to develop a safe and secure anonymised datasets that will be critical to the NHS's goal to improving quality, safety and efficiency of the health care we provide to our patients. The dataset is used for all pathways of care projects and evaluation identified by the programme. These include child health, diabetes, epilepsy, emergency care, medically unexplained symptoms, and frailty patient care pathways.

Connect Yorkshire currently has access to a number of datasets collected locally. All secondary care electronically recorded routine Patient Administration System (PAS) data from Secondary Use Services (SUS), Systemone, Cerner, Medway and other clinical systems utilised at BTHFT, Airedale Hospitals (AHFT) and Calderdale and Huddersfield NHS Foundation Trust (CHFT) relating to individual patients are extracted by BTHFT, AHFT, CHFT, The Phoenix Partnership (TPP) or Apollo Medical Software Solutions Ltd.

The following pseudonymised datasets are required from NHS England:

- Civil Registries Data (CRD) (Deaths)

The addition of deaths data into the Connected Yorkshire dataset will allow further analysis on patient pathways and their outcomes that will be used to inform commissioning decisions. This is an essential piece of data which will massively enrich the current value of the data already held.

The pseudonymised data is required for the following purposes:

 Population health management:

• Understanding the interdependency of care services

• Targeting care more effectively

 Understanding cohorts of residents who are at risk of becoming users of some of the more expensive services, to better understand and manage those needs

 Monitoring population health and care interactions to understand where people may slip through the net, or where the provision of care may be being duplicated

 Service redesign

 Health Needs Assessment – identification of underlying disease prevalence within the local population

 Patient stratification and predictive modelling - to highlight cohorts of patients at risk of requiring hospital admission and other avoidable factors such as risk of falls, computed using algorithms executed against linked de-identified data, and identification of future service delivery models

Processing will be conducted by Bradford Teaching Hospitals NHS Foundation Trust

Data accessed under this Agreement will be processed in accordance with GDPR 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) and 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 of the Article).

PROCESSING CONDITIONS:

Data must only be used for the purposes stipulated within this Data Sharing Agreement. Any additional disclosure / publication will require further approval from NHS England. All access to data is auditable by NHS England.

The Data Controller must keep a record of locations the data is processed and stored. These addresses must be within the UK. The Data Controller should minimise the number of processing and storage locations to prevent excessive processing. NHS England may request a record of processing and storage locations at any time.

All access to data is managed under Role-Based Access Controls. Users can only access data authorised by their role and the tasks that they are required to undertake.

Data may only be processed and held as long as is required to carry out the purposes listed within this agreement.

Patient level data will not be linked other than as specifically detailed within this Data Sharing Agreement. Data released will only be used for the purposes laid out in the application/agreement.

NHS England reminds all organisations party to this agreement of the need to comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).

ONWARD SHARING

Aggregated reports only with small number suppression can be shared externally as set out within NHS England guidance applicable to each data set.

SEGREGATION:

Where the Data Processor and/or the Data Controller hold both identifiable and pseudonymised data, the data will be held separately so data cannot be linked.

All access to data is auditable by NHS England.

Google UK Limited supply Cloud Services for Humber Teaching NHS Foundation Trust and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data.

Microsoft Limited provide Cloud Services for NHS North of England Commissioning Support Unit and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data

Humber Teaching NHS Foundation Trust provide IT Infrastructure for Bradford Teaching Hospitals NHS Foundation Trust and are therefore listed as a data processor. They supply support to the system, but do not access data. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data

The Data Services for Commissioners Regional Office (DSCRO) obtains the following data sets:

Civil Registries Data (CRD) (Deaths)

The data is then disseminated as follows:

1. Civil Registries Data (CRD) (Deaths) data only is pseudonymised using an open pseudo tool with a SALT key specific to this project by the DSCRO

2. The pseudonymised data is then securely transferred from the DSCRO to Bradford Teaching Hospitals NHS Foundation Trust business intelligence team

3. The DSCRO shares the SALT key specific to this project with providers directly

4. The providers then send the pseudonymised data to Bradford Teaching Hospitals NHS Foundation Trust business intelligence team. This data includes:

- Primary Care data

- Secondary Care data

- Maternity data

- Community Care data

- Ambulance / 111 data

- Children Social Care data

- Adult Social Care data

- National Child Measurement Programme data

- Education data

5. Bradford Teaching Hospitals NHS Foundation Trust business intelligence team process the data in line with the purposes stipulated in this agreement

6. Patient level data will not be shared outside of the Trust and will only be shared within on a need to know basis, as per the purposes stipulated within the Data Sharing Agreement. External aggregated reports only with small number suppression can be shared as set out within NHS England guidance applicable to each data set.

Bradford Teaching Hospitals NHS Foundation Trust (BTHFT), as well as being the processor and controller of this data, are also a provider. Nobody in the analysis has access to the SALT; but a member of the business intelligence team in the hospital has the ability to pseudonymise hospital datasets and therefore requires access to the SALT. They do not work in analysis team and are separate physically and organisationally. However, BTHFT is the overarching organisation for the analysis team and the hospital.

1. Validation of programs implemented to improve patient pathway e.g. High/low users unable to validate if the process to help patients find the best support are working.

2. Clinical – use the death certificate data to identify individuals who may have needed palliative care support at the end of life, understand reasons why patients are dying, and what additional support services can be put in to support.

3. Understanding where patients are dying e.g. are patients dying at hospitals due to hospices closing due to funding/staffing issues, and the impact of COVID19 on place of death and how this should inform service planning.

4. Assess inequalities in access and outcomes at the end of life, related to ethnicity and deprivation and their intersection and therefore where interventions need to be targeted.

5. Removal of patients from Risk Stratification reports.

6. Facilitation of early identification, red flags and communication of need across services to allow active targeting and intervention at the earliest stage through real-time access to data.

1. Understanding the patterns of health needs for patients in Bradford by using death certificate data to identify those who had a need for palliative care involvement

2. Mapping of pathways of care across organisations

3. Using this learning to develop new patient care interventions and quality improvement programmes, that integrate health and social care, including self-management and community based approaches.

4. Evaluating the effects of changes in healthcare practice and policy in Bradford.

5. Develop learning health systems and reduce data action latency.

Using the linked data, including death certificate data, for the first time Bradford Teaching Hospitals NHS Foundation Trust were able to determine the patient cohort who likely had palliative care needs in the last year of life at a Bradford population level. This allowed the Trust to assess inequalities in access to generalist and specialist palliative care services according ethnicity, deprivation, gender, diagnosis and place of death adjusted for age.