PIONEER - Health Data Research Hub for Acute Care
Lead Research Organisation:
University Hospitals Birmingham NHS Foundation Trust
Department Name: UNLISTED
Abstract
PIONEER aims to improve healthcare pathways and treatments by understanding the symptoms and diseases people have when they become unwell: whether they had been to hospital or other healthcare providers before with the same problems; the time it took to make a diagnosis; and the care they received. PIONEER enhances public trust in health data use, working with patients, the public and other stakeholders to ensure that governance of data access is transparent and in the public interest. PIONEER is commited to communicating these principles effectively to improve understanding, and raise the profile of, the value of health data research. PIONEER is improving the quality and accuracy of acute care health data by: working with healthcare providers; providing a secure and scalable data environment; and placing patients and the public at the heart of all data sharing decisions. PIONEER brings scale and efficiency to dataset aggregation and curation of anonymised routinely collected data relevant to unplanned and acute health care. PIONEER makes these datasets discoverable and appropriately accessible to research organisations, NHS bodies and those who are conducting innovation activities which will lead to direct patient benefit. PIONEER provides an environment of cross-sector collaboration with strong relationships between patients, the public, NHS, industry and academic researchers to support research, development and innovation.
Technical Summary
PIONEER is the Health Data Research Hub for Acute Care, led by the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, in partnership with West Midlands Ambulance Service, the University of Warwick, and Insignia Medical Systems. Acute care is the provision of unplanned medical care; from out of hours primary care, ambulance assessment, emergency medicine, surgery and intensive care. Demand for acute health services are currently unsustainable for our national healthcare resource. Despite this, there has been less innovation in acute care than in many others health sectors, in part due to siloed information about patients with acute illnesses.
The PIONEER Hub collects and curates acute care data from across the health economy, including primary, secondary, social care, and ambulance data.
PIONEER uses this data to:
provide accurate, real-time data for capacity planning and service innovation
support learning healthcare systems including better use of current/novel investigations, treatments and pathways
map innovation need
Ultimately, PIONEER enables stakeholders to develop, test, and deliver new ways of caring for acutely unwell people, supported with expert patient, health care professional, and compute/analytic services. out a framework for further investment from UKRI, to be spent within the 21/22 financial year.
The PIONEER Hub collects and curates acute care data from across the health economy, including primary, secondary, social care, and ambulance data.
PIONEER uses this data to:
provide accurate, real-time data for capacity planning and service innovation
support learning healthcare systems including better use of current/novel investigations, treatments and pathways
map innovation need
Ultimately, PIONEER enables stakeholders to develop, test, and deliver new ways of caring for acutely unwell people, supported with expert patient, health care professional, and compute/analytic services. out a framework for further investment from UKRI, to be spent within the 21/22 financial year.
Organisations
- University Hospitals Birmingham NHS Foundation Trust (Lead Research Organisation)
- Alan Turing Institute (Collaboration)
- University of Manchester (Collaboration)
- UNIVERSITY OF NOTTINGHAM (Collaboration)
- UNIVERSITY OF BIRMINGHAM (Collaboration)
- University of Warwick (Collaboration)
- UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST (Collaboration)
Publications
Adderley NJ
(2022)
Development and external validation of prognostic models for COVID-19 to support risk stratification in secondary care.
in BMJ open
Aiyegbusi OL
(2023)
Considerations for patient and public involvement and engagement in health research.
in Nature medicine
Aiyegbusi OL
(2021)
Symptoms, complications and management of long COVID: a review.
in Journal of the Royal Society of Medicine
Almeshari MA
(2021)
The diagnosis of asthma. Can physiological tests of small airways function help?
in Chronic respiratory disease
Almeshari MA
(2021)
Small Airways Response to Bronchodilators in Adults with Asthma or COPD: A Systematic Review.
in International journal of chronic obstructive pulmonary disease
Alobaidi NY
(2022)
Small airway function measured using forced expiratory flow between 25% and 75% of vital capacity and its relationship to airflow limitation in symptomatic ever-smokers: a cross-sectional study.
in BMJ open respiratory research
Alobaidi NY
(2022)
The prevalence of bronchodilator responsiveness of the small airway (using mid-maximal expiratory flow) in COPD - a retrospective study.
in BMC pulmonary medicine
Arora A
(2023)
The value of standards for health datasets in artificial intelligence-based applications.
in Nature medicine
Atkin C
(2021)
Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff.
in Research involvement and engagement
| Title | Your health data could save lives |
| Description | An animation, co-written with members of the public to highlight how health data can be used for research and what peoples choices are |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2022 |
| Impact | Very good feedback and wide usage |
| Description | Botswana ageing policy group |
| Geographic Reach | Africa |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | A working group to discuss and inform policy changes in Botswana to protect rights of older people (not a protected characteristic in Botswana) Policy paper published and working group established |
| Description | Contributed to a paper for ISCF about health data use and coordinated funding |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Further funding to enable the NHS to improve data quality to inform services and innovation through ISCF and HDR-UK |
| Description | Meeting with government ministers at BEIS |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Patient working group on use of health data in reseach |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Education saw an increase in the percentage of adults and children who would be willing to heave their health data used for research purposes through workshops which explained the potential good that can come from this |
| Description | Workshop with Members of the Public and Patients to |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | Survey conducted before and after event showed a change in attitudes and enhanced knowledge |
| Description | ADMISSION: Co-morbidity clusters in acutely admitted patients |
| Amount | £3,400,000 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 07/2021 |
| End | 07/2025 |
| Description | Biomedical Research Centre. Infections in Acute Care |
| Amount | £1,600,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2022 |
| End | 11/2027 |
| Description | COPE-COVID - NHS Staff and risk and impact of COVID-19 |
| Amount | £1,500,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2020 |
| End | 08/2022 |
| Description | COVID-TLC. Long COVID symptoms in community care. |
| Amount | £1,500,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 08/2021 |
| End | 08/2024 |
| Description | DECOVID funding - a COVID facing partnership between UCL, UCLH, University of Birmingham, Alan Turing Institute and University Hospitals Birmingham NHS Foundation Trust |
| Amount | £1,500,000 (GBP) |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 05/2020 |
| End | 06/2021 |
| Description | Medicines in Acute Care Driver programme |
| Amount | £5,000,000 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 04/2023 |
| End | 03/2028 |
| Description | Neutrophil energetics in Community Acquired Pneumonia |
| Amount | £450,000 (GBP) |
| Organisation | The Dunhill Medical Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 02/2020 |
| End | 08/2024 |
| Description | Patient Safety Reserach Centre Digital Clinical Support Tools in Acute Care |
| Amount | £3,600,000 (GBP) |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2023 |
| End | 03/2028 |
| Description | Winter Pressures |
| Amount | £75,000 (GBP) |
| Organisation | Health Data Research UK |
| Sector | Private |
| Country | United Kingdom |
| Start | 01/2023 |
| End | 03/2023 |
| Title | A blueprint for a TRE which meets international security standards |
| Description | This enables a TRE to be spun up in matter of hours, which is safe and secure |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | We are just publishing this |
| Title | PIONEER The HDRUK Hub In Acute Care |
| Description | PIONEER is a data safe haven and analytics environment built using Microsoft Azure, with cybersecurity testing which holds de-identifed NHS data for research and innovation. It has overarching ethics and CAG approval to link individual data across healthcare providers |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | 13 publication 32 requests for data access Data shared with 185 analysts across the UK |
| URL | http://www.pioneerdatahub.co.uk |
| Title | A dataset of hospitalised patients with Sarcoma |
| Description | Cancer diagnoses before and after hospitalisation. This dataset includes 907 patients from 2004 to present, including granular ethnicity, multi morbidity, serial physiology, blood biomarkers, intervention and outcome data. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Led to a national service evaluation to standardise care pathways |
| Title | A deeply phenotyped dataset of hospitalised COVID-19 patients in Birmingham; including granular ethnicity and multi-morbidity data confirmed in primary care; physiology, blood biomarkers, treatments, interventions, ITU admissions and outcomes. |
| Description | PIONEER: The impact of ethnicity and multi-morbidity on COVID-related outcomes; a primary care supplemented hospitalised dataset Dataset number 3.0 Coronavirus disease 2019 (COVID-19) was identified in January 2020. Currently, there have been more than 65million cases and more than 1.5 million deaths worldwide. Some individuals experience severe manifestations of infection, including viral pneumonia, adult respiratory distress syndrome (ARDS) and death. Evidence suggests that older patients, those from some ethnic minority groups and those with multiple long-term health conditions have worse outcomes. This secondary care COVID dataset contains granular demographic and morbidity data, supplemented from primary care records, to add to the understanding of patient factors on disease outcomes. PIONEER geography The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions in both wave 1 and 2. EHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". UHB has cared for >5000 COVID admissions to date. Scope: All COVID swab confirmed hospitalised patients to UHB from January - May 2020. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes but also primary care records and clinic letters. Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes. Linked images available (radiographs, CT, MRI, ultrasound). Available supplementary data: Health data preceding and following admission event. Matched "non-COVID" controls; ambulance, 111, 999 data, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Data sharing with > 185 analysts 13 publications 32 projects supported by PIONEER |
| URL | https://web.www.healthdatagateway.org/dataset/cfa1ef13-8ae0-4827-8a0f-9d2df5244725 |
| Title | A synthetic dataset of 15,000 "patients" with Community Acquired Pneumonia (CAP) |
| Description | CAP is common, has variable outcomes and a complex management pathway. Hospital-based decision support algorithms would be highly valuable. This is a diverse and realistic synthetic dataset of 15,000 "CAP patients" to facilitate algorithm development. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Used in an industry collaboration |
| Title | Clinical characteristics of hospitalised primary biliary cholangitis patients |
| Description | Patients with hospitalised Primary Biliary Cholangitis (PBC) from 2000 to date. Granular care pathways. Deeply phenotyped. Serial physiology, blood markers, outcome data. Demography, multi-morbidity, investigations and treatments. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Led to an industry collaboration and a new care pathway |
| Title | HDR-UK Database in acute care |
| Description | A curated database of > 2M health records from acute care episodes across the West Midlands |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | Only just opened (Dec 2019) but already multiple requests for data access |
| Title | Hosp patients admitted during COVID pandemic with coagulopathies including venous thromboembolic events & bleeds. Granular condition, multi-morbidity, interventions & treatments. Serial physiology, blood biomarkers, ITU spells, outcome. Deeply phenotyped. |
| Description | In December 2019, the first case of severe acute respiratory syndrome coronavirus 2 (SARS-COV-2) was described and by March 2020, the World Health Organization had declared the disease (Coronavirus disease 2019, COVID-19) a pandemic. Whilst respiratory symptoms are the fundamental feature of the disease, evidence indicates that the disease is associated with coagulation dysfunction which predisposes patients to an increased risk of both venous and arterial thromboembolism (TE) and potentially increased mortality risk as a consequence. Biomarkers associated with TE (D-dimers) are often raised in people with COVID but without clear evidence of TE. It is important to understand who is at most risk of TE, to manage disease effectively. This dataset (in OMOP) describes patients with and without COVID who were admitted to UHB including all those with and without TE. PIONEER geography The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. Birmingham was hard hit by all COVID waves and University Hospitals Birmingham NHS Foundation Trust (UHB) had >8000 COVID admissions by the end of December 2020. EHR. UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". Scope: All patients admitted during the first wave of the COVID-19, both with and without COVID. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, SARS-CoV-2 swab result, diagnosis of TE, clotting parameters, D-Dimers, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes. Available supplementary data: Matched controls; ambulance, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | PIONEER has supported 13 publications, 32 projects and >185 analysts with data |
| URL | https://web.www.healthdatagateway.org/dataset/dd4629c0-14b6-4cba-8dcf-31ec5fea68bb |
| Title | Hospital COVID patients (6th Jan 2020 onwards). Granular severity, ethnicity, co-morbidity. Serial physiology, blood biomarkers, images, treatments, ITU, outcome, pre/post admission healthcare use. Deeply phenotyped, longitudinal. Waves 1/ 2 |
| Description | PIONEER: Deeply-phenotyped hospital COVID patients: severity, acuity, therapies, outcomes Dataset number 4.0 Coronavirus disease 2019 (COVID-19) was identified in January 2020. Currently, there have been more than 6 million cases& more than 1.5 million deaths worldwide. Some individuals experience severe manifestations of infection, including viral pneumonia, adult respiratory distress syndrome (ARDS)& death. There is a pressing need for tools to stratify patients, to identify those at greatest risk. Acuity scores are composite scores which help identify patients who are more unwell to support & prioritise clinical care. There are no validated acuity scores for COVID-19 & it is unclear whether standard tools are accurate enough to provide this support. This secondary care COVID dataset contains granular demographic, morbidity, serial acuity and outcome data to inform risk prediction tools in COVID-19. PIONEER geography The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. The West Midlands was one of the hardest hit regions for COVID admissions in both wave 1 & 2. EHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". UHB has cared for >5000 COVID admissions to date. Scope: All COVID swab confirmed hospitalised patients to UHB from January - May 2020. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes but also primary care records& clinic letters. Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes. Linked images available (radiographs, CT, MRI, ultrasound). Available supplementary data: Health data preceding & following admission event. Matched "non-COVID" controls; ambulance, 111, 999 data, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Data shared with >185 analysts 32 projects supported 13 publications - all supported by HDRUK Hub PIONEER |
| URL | https://web.www.healthdatagateway.org/dataset/16a09f1b-3654-4ec3-9913-fb70cb1e2364 |
| Title | Hospitalised Community Acquired Pneumonia before & during the COVID-19 pandemic |
| Description | Patients hospitalised with community acquired pneumonia (CAP) before and during COVID-19 pandemic. Granular care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, outcome data. Deeply phenotyped. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Used to support a DunHill fellowship |
| Title | Investigating the impact of frailty, age and illness severity during COVID-19 |
| Description | Frailty is a syndrome of increased vulnerability to incomplete resolution of homeostasis (healing or return to baseline function) following a stressor event (such as an infection or fall) and it is associated with poor outcomes including increased mortality and reduced quality of life. Prevalence increases with age, but it should not be considered an inevitable consequence of ageing. The pathophysiology of frailty is poorly understood but the immune and endocrine systems appear to be involved in its development or response. Age and frailty have been proven to be independently predictive of outcomes in patients admitted with an acute illness. In COVID-19, routine frailty identification has been used to inform decision making about high level of treatment. This is because frailty usually moderates the effect of age on mortality. Anecdotally, this effect has not been recognised by clinicians looking after older COVID-19 patients. Four papers have been published so far on the effect of frailty on COVID-19 with differing results. However, all papers show the independent predictive value of age when controlling for frailty, which is not usually seen in studies of age and frailty in other acute illnesses. PIONEER geography The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix. EHR: UHB is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & an expanded 250 ITU bed capacity during COVID. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". Scope: All patients aged 18 years and above admitted for an acute illness in hospitals within University Hospitals Birmingham NHS trust during the COVID-19 pandemic. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, imaging reports, all prescribed & administered treatments (fluids, blood products, procedures), all outcomes. Available supplementary data: Matched controls; ambulance, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Used in a number of active research projects |
| Title | Longitudinal, routine data for University Hospitals Birmingham NHSFT patients recruited to the 100K Genomes project that accessed Acute Care at UHB. Rare cancers & diseases, adult & children. Serial & granular. Investigations, therapies, outcomes. |
| Description | 1 in 17 people are born with or develop a rare disease during their lifetime. 80% of rare diseases have an identified genetic component. However, there are usually significant diagnostic delays. The 100k genome project was established to collect clinical data, genomic sequencing & samples from people with rare diseases, to better understand disease & find novel treatments & interventions. This includes rare cardiovascular, ciliopathy, endocrine, gastroenterological, haematological, metabolic, neurological, renal, respiratory skeletal & rheumatological disorders & cancers. See https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/information-for-gmc-staff/rare-disease-documents/rare-disease-eligibility-criteria/ The PIONEER University Hospital Birmingham (UHB) secondary care 100k genomics dataset contains granular demographic, morbidity, treatment & outcome data, supplemented with acute care contacts with serial physiology, blood biomarker data from UHB patients recruited to this programme, to better understand the acute healthcare needs of this group of patients. PIONEER geography The West Midlands has a population of 5.9m & includes a diverse ethnic & socio-economic mix. There is a higher than average percentage of minority ethnic groups & a higher than average proportion of patients with rare diseases. Birmingham is home to the first Centre for Rare Diseases for adults & children, treating more than 500 rare diseases & 9000 patients per year. EHR. University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2m patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". Scope: All patients recruited to the 100K genome project from UHB. This includes all routinely collected health data for all these patients, but data is uniquely supplemented with all acute care contacts through UHB. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to acute care process (timings, staff grades, specialty review, wards), presenting complaint, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes. Available supplementary data: Matched controls; ambulance, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Data sharing with >185 analysts 32 projects supported 13 publications to date |
| URL | https://web.www.healthdatagateway.org/dataset/ceae4fe0-4e98-4e3c-85db-e86539aade81 |
| Title | Patients admitted with a cerebrovascular evenGranular detail of care pathways. Multi-morbidity, investigations, interventions and treatments. Serial physiology, blood biomarkers, physiotherapy, outcome. Deeply phenotyped. |
| Description | PIONEER geography The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average % of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. WM has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. This is the SAMBA dataset from 4 NHS hospitals. EHR University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". Scope: All patients from 2015 onwards, curated to focus on Stroke. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to process of care (admissions, wards and discharge outcomes), presenting complaints, therapies, all physiology readings (pulse, temperature, blood pressure, screening for dysphagia, all sample analysis results (urine specimens, blood specimens), all prescribed & administered treatments and all outcomes. Available supplementary data: More extensive data including granular serial physiology, bloods, conditions, interventions, treatments. Ambulance, 111, 999 data, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | PIONEER has supported data access by >185 analysts, 13 publications and 32 projects |
| URL | https://web.www.healthdatagateway.org/dataset/ddf7f82f-b453-442d-b562-bb0157593831 |
| Title | Synthetic Dataset- Patients at risk of sudden death: hypertrophic cardiomyopathy |
| Description | Synthetic data replicating 30,000 ethnically diverse hypertrophic cardiomyopathy patients: This includes clinical and biological phenotyping, co-morbidities, investigations (including ECG, ECHO), any procedures undertaken and outcomes. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | Used in an industry partnership |
| Title | Synthetic dataset of cross council data for asthma exacerbations, cytokines, air pollution and weather |
| Description | A synthetic dataset including data fields replicating an EHR, geographical location, air quality, IL-6 levels and ambient temperature above for > 20,000 records |
| Type Of Material | Database/Collection of data |
| Year Produced | 2022 |
| Provided To Others? | Yes |
| Impact | Enabled deliver of FED-NET |
| Title | UHB 2019 Summer Society of Acute Medicine Benchmarking Audi |
| Description | The Society for Acute Medicine (SAM) Benchmark Audit (SAMBA) is a national benchmark audit of acute medical care. The aim of SAMBA19 is to describe the severity of illness of acute medical patients presenting to Acute Medicine within UK hospitals, speed of assessment, pathway and progress seven days after admission and to provide a comparison for each participating unit with the national average (or 'benchmark'). On average >150 hospitals take part in this audit per year. SAMBA19 summer audit measured adherence to some of the standards for acute medical care. Acute Medical Units work 24-hours per day and 365 days a year. They are the single largest point of entry for acute hospital admissions and most patients are at their sickest within the first 24-hours of admission. This dataset includes • Total number of patients assessed by acute medicine across ED, AMU and Ambulatory Care. • Medical and nursing levels • Severity of illness • Timeliness in processes of care • Clinical outcomes 7 days after admission PIONEER geography The West Midlands (WM) has a population of 5.9million & includes a diverse ethnic, socio-economic mix. There is a higher than average % of minority ethnic groups. WM has a large number of elderly residents but is the youngest population in the UK. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. WM has a high prevalence of COPD, reflecting the high rates of smoking and industrial exposure. Each day >100,000 people are treated in hospital, see their GP or are cared for by the NHS. This is the SAMBA dataset from 4 NHS hospitals. EHR University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services & specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds & 100 ITU beds. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary & secondary care record (Your Care Connected) & a patient portal "My Health". Scope: These data come from Queen Elizabeth Hospitals Birmingham, Good Hope Hospital, Solihull Hospital and Heartlands Hospital. All admissions in a pre-defined 24-hour period, the severity of illness, patient demographics, co-morbidity, acuity scores, serial, structured data pertaining to care process (timings, staff grades, specialty review, wards) all prescribed & administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support), all outcomes. Available supplementary data: More extensive data including granular serial physiology, bloods, conditions, interventions, treatments. Ambulance, 111, 999 data, synthetic data. Available supplementary support: Analytics, Model build, validation & refinement; A.I.; Data partner support for ETL (extract, transform & load) process, Clinical expertise, Patient & end-user access, Purchaser access, Regulatory requirements, Data-driven trials, "fast screen" services |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | https://www.acutemedicine.org.uk/samba-2019-national-report/ |
| Description | Birmingham Acute Care Research Group |
| Organisation | University Hospitals Birmingham NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | A research collaboration between health staff, management and research staff to increase the delivery of research in acute care. We have provided academic oversight and help with grant writing, publishing and data analysis |
| Collaborator Contribution | Access to clinical data, more input from clinical staff, so research activity can be increased across both partner sites |
| Impact | A number of publications from acute care including: What is the significance of monoclonal gammopathy of undetermined significance? Atkin C, Richter A, Sapey E. Clin Med (Lond). 2018 Oct;18(5):391-396. doi: 10.7861/clinmedicine.18-5-391. PMID: 30287433 Free PMC Article Assessing Fluid Resuscitation in Adults with Sepsis Who Are Not Mechanically Ventilated: a Systematic Review of Diagnostic Test Accuracy Studies. Seccombe A, McCluskey L, Moorey H, Lasserson D, Sapey E. J Gen Intern Med. 2019 Sep;34(9):1874-1883. doi: 10.1007/s11606-019-05073-9. Epub 2019 May 31. PMID: 31152360 Described Practices for Assessing Fluid Resuscitation in Acute Hospital Care: A Qualitative Study. Lloyd E, Ignatowicz A, Sapey E, Lasserson D, Seccombe A. Acute Med. 2019;18(4):223-231. PMID: 31912053 The prevalence and significance of monoclonal gammopathy of undetermined significance in acute medical admissions. Atkin C, Reddy-Kolanu V, Drayson MT, Sapey E, Richter AG. Br J Haematol. 2020 Jan 30. doi: 10.1111/bjh.16487. [Epub ahead of print] PMID: 31999849 |
| Start Year | 2019 |
| Description | CATALYST Study |
| Organisation | University of Birmingham |
| Department | Birmingham Clinical Trials Unit |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Data from the MRC grant used to power aspects of the CATALYST study and help decide initial drugs for targeting COVID |
| Collaborator Contribution | Helped design and now run the management of this phase 2 Complex platform trial for COVID |
| Impact | Still recruiting but 2 arms reported to date |
| Start Year | 2020 |
| Description | DARE Sprints 1b - DARE-FX: delivering a federated network of TREs to enable safe analytics |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This is a new collaboration which has arisen due to the DARE sprint 1a work, seeking to expand on our work within the initial DARE sprint |
| Collaborator Contribution | We are contributing technical expertise and synthetic data |
| Impact | The project started 2 months ago -so too early for outputs as yet |
| Start Year | 2023 |
| Description | DARE Sprints 1b - DARE-FX: delivering a federated network of TREs to enable safe analytics |
| Organisation | University of Nottingham |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This is a new collaboration which has arisen due to the DARE sprint 1a work, seeking to expand on our work within the initial DARE sprint |
| Collaborator Contribution | We are contributing technical expertise and synthetic data |
| Impact | The project started 2 months ago -so too early for outputs as yet |
| Start Year | 2023 |
| Description | DECOVID and Alan Turing Institute |
| Organisation | Alan Turing Institute |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Curated data to be shared with complex modelling and provided clinical oversight of projects to ensure relevance |
| Collaborator Contribution | Analytics and data wrangling |
| Impact | Combined health data in OMOP from UCLH and UHB, with an academic partnership spanning UCL, UoB, Cambridge and Oxford Universities, LSHTM, Leeds and Edinburgh University |
| Start Year | 2020 |
| Description | NIHR Patient Safety Research Collaboration Theme - Clinical Decision Support Tools |
| Organisation | University of Warwick |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | We will lead on building and testing of clinical decision support tools fir use in acute and emergency medicine |
| Collaborator Contribution | They will help provide input into user acceptability |
| Impact | Starting April 2023 - so no impacts as yet |
| Start Year | 2023 |
| Description | • Winter Pressures NHSE Funding - Improving patient selection to same day emergency care |
| Organisation | University Hospitals Birmingham NHS Foundation Trust |
| Department | Acute Medicine |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We are running this project, funded by NHSE, to see if we can build better selection tools for SDEC care pathways - to reduce avoidable admissions to hospitals via acute medical units. |
| Collaborator Contribution | N/A |
| Impact | We have developed a patient facing leaflet about SDEC, held community workshops about our tool, and have developed two potential tools for further assessment. |
| Start Year | 2023 |
| Title | CATALYST platform study for COVID |
| Description | CATALYST is a rapid, open-label, phase II, a multi-arm multi-stage trial which rapidly tests promising drugs that are currently available, alongside other novel therapeutic options, to assess their safety and potential efficacy. This trial will include hospitalised patients with COVID-19 who are hypoxic, admitted to either hospital wards or ICU, and are at risk of deterioration. Drugs that show promising results will then be considered for larger-scale testing by one of the current national platform trials (RECOVERY or REMAP-CAP). The design of the CATALYST trial is such that new therapies can be introduced sequentially, based on secure laboratory science and clinical outcomes. Owing to its design and collaboration, CATALYST acts as both a filter and a "spring-board". It simultaneously discounts unsuitable agents whilst providing promising drugs with a quick and smooth transition into phase III trials. In doing this CATALYST helps meet the need for high-throughput screening (to identify promising COVID-19 treatments), as well as the necessity to get effective treatments to patients as quickly as possible. |
| Type | Therapeutic Intervention - Drug |
| Current Stage Of Development | Early clinical assessment |
| Year Development Stage Completed | 2020 |
| Development Status | Under active development/distribution |
| Clinical Trial? | Yes |
| Impact | Became a nationally adopted, CMO prioritised COVID study |
| URL | https://www.birmingham.ac.uk/research/crctu/trials/catalyst/professionals/index.aspx |
| Title | ETHOS staff health clinic = a trial to see if health screening can improve the health and well being of NHS staff |
| Description | We are currently conducting a feasibility study which is in set up |
| Type | Preventative Intervention - Behavioural risk modification |
| Current Stage Of Development | Early clinical assessment |
| Year Development Stage Completed | 2020 |
| Development Status | Under active development/distribution |
| Impact | Initial feedback from staff has been very positive but the trial will enable formal evaluation |
| Title | TRE for federated analytics now being used widely |
| Description | A TRE which is currently used across a small number of Data Controllers |
| Type | Health and Social Care Services |
| Current Stage Of Development | Refinement. Non-clinical |
| Year Development Stage Completed | 2022 |
| Development Status | Under active development/distribution |
| Impact | A cost effective, secure and deployable TRE |
| Title | TRE for PIONEER for federated analytics |
| Description | This is a blueprint for a TRE |
| Type Of Technology | Software |
| Year Produced | 2022 |
| Impact | Adopted across a number of Data controllers |
| Description | ABPI meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | Discussion group with ABPI partners about potential consortium funded projects |
| Year(s) Of Engagement Activity | 2021 |
| Description | ABPI national events |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Industry/Business |
| Results and Impact | An engagement event to showcase work to industry operatives and discuss future collaborations |
| Year(s) Of Engagement Activity | 2019,2020 |
| Description | Chair of BTS Science Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Designing the foremost meeting for Respiratory Clinicians and Scientists in the UK but with significant international presence |
| Year(s) Of Engagement Activity | 2018,2019 |
| Description | MD Catapult national meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | A meeting to discuss how to increase the pace and scale of adoption of new innovation within the. NHS |
| Year(s) Of Engagement Activity | 2019,2020 |
| Description | Meeting a BEIS to discuss future health research funding |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A meeting with government ministers, industry leaders at BEIS (Victoria st, London) to discuss new policies for research funding |
| Year(s) Of Engagement Activity | 2020 |
| Description | Questionnaire on health data use |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Work shops and questionnaires about health data use in the UK - over 400 participants included in a series of events across the UK |
| Year(s) Of Engagement Activity | 2019 |
| Description | Stakeholder workshop of CIO, CMOs, form data controllers and data scientists |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We held a series of workshops to discuss the implications of the Goldacre Review and how data egress could be prevented through the use of federated analytics and learning through TREs |
| Year(s) Of Engagement Activity | 2022 |
| Description | Webinar series on health data use - 6 x 1 hour slots |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Six 1-hour long seminars covering topics such s safe data use, governance, health inequalities, data and COVID, with open Q&A in the end. 60 questions answered live |
| Year(s) Of Engagement Activity | 2020,2021 |
| URL | https://www.pioneerdatahub.co.uk/videos/ |
| Description | Workshop with members of the public about their views on data egress versus federated approaches to consented health data |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A workshop and follow on series of working groups to agree on knowledge share and form a leaflet for members of the public to describe what federated analysis is, what its benefits and limitations are |
| Year(s) Of Engagement Activity | 2022 |
| Description | World Pneumonia Day -2 events |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 2 x talks given at World Pneumonia Day. Each had > 500 attendees with a global audience. |
| Year(s) Of Engagement Activity | 2021 |