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.

Background: Coronavirus disease 2019 (COVID-19) was identified in January 2020. Currently, there have been more than 125 million cases, and more than 2.7 million deaths worldwide. Some individuals experience severe manifestations of infection, including viral pneumonitis, adult respiratory distress syndrome (ARDS) and death. Many patients required ventilatory support including high flow oxygen, continuous positive airway pressure and intubated with or without tracheotomy. There was considerable learning on how to manage COVID-19 during the pandemic and new drugs became available during the different waves. This secondary care COVID dataset contains granular ventilatory, demographic, morbidity, serial acuity, medications and outcome data in COVID-19 across all waves and will be continuously refreshed.

PIONEER geography: The West Midlands (WM) has a population of 5.9 million and includes a diverse ethnic and 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, more than 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 across all waves.

Electronic Health Records (EHR): University Hospitals Birmingham NHS Foundation Trust (UHB) is one of the largest NHS Trusts in England, providing direct acute services and specialist care across four hospital sites, with 2.2 million patient episodes per year, 2750 beds and 100 ITU beds. ITU capacity increased to 250 beds during the COVID pandemic. UHB runs a fully electronic healthcare record (EHR) (PICS; Birmingham Systems), a shared primary and secondary care record (Your Care Connected) and a patient portal “My Health”. UHB has cared for more than 10,000 COVID admissions to date.

Scope: All COVID swab confirmed hospitalised patients to UHB from January 2020 to the current date. The dataset includes highly granular patient demographics and co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), severity, ventilatory requirements, acuity, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed and administered treatments (fluids, antibiotics, inotropes, vasopressors, organ support, dexamethasone, remdesivir, tocilizumab), all outcomes.

Available supplementary data: Ambulance, 111, 999 data, synthetic data.

Available supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.

This study consists of transcripts of interviews conducted as part of the research project Identity, Inequality and the Media in Brexit-Covid-19-Britain. These transcripts report verbatim on in-depth interviews conducted with interviewees who live in the South West, East Midlands and North East of England. The interviews were designed to explore the ways in which participants perceived and experienced the social and political impacts of COVID-19 and Brexit. They explore the impact of both the pandemic and Brexit on individuals’ daily lives, their sense of belonging (or not) to place and nation, as well as the ways in which individuals engage with the media. Some of the interviews include a discussion of images that the participants felt captured the processes of Brexit and the pandemic. Furthermore, some of the interviews conducted in the South West focussed specifically on the project artist’s representation of the research themes.

The study authors conducted 90 interviews for this research. Of these, 80 are included in the UKDS version due to confidentiality considerations.

The interviews were conducted between October 2020 and July 2021. During this time England was experiencing national lockdowns and varying degrees of social distancing restrictions due to the COVID-19 pandemic.

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.

As of January 12, 2023, COVID-19 has been responsible for 202,157 deaths in the UK overall. The North West of England has been the most affected area in terms of deaths at 28,116, followed by the South East of England with 26,221 coronavirus deaths. Furthermore, there have been 22,264 mortalities in London as a result of COVID-19.

For further information about the coronavirus (COVID-19) pandemic, please visit our dedicated Facts and Figures page.

The use of antimicrobial drugs is linked to antimicrobial resistance which can lead to infections that are harder to treat and may be associated with worse outcomes for the patient.

The use of antibiotics changed in hospital during the different waves of the COVID-19 pandemic, as data was used to assess if antibiotic therapy was associated with better health outcomes for patients with confirmed COVID-19. Looking at changes in health outcomes linked to antibiotic therapy across the whole hospital instead of only patients with COVID-19 over time will help understand if changes to antibiotic use during the pandemic may have had an impact on the risk of antibiotic resistance.

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

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

Scope: Longitudinal and individually linked, so that the preceding and subsequent health journey can be mapped and healthcare utilisation prior to and after admission understood. The dataset includes highly granular patient demographics, co-morbidities taken from ICD-10 and SNOMED-CT codes. Serial, structured data pertaining to process of care (timings, wards and admissions), surgery procedures, microbiology reports, COVID results, prescriptions, drug administered and all outcomes.

Available supplementary data: Matched controls; ambulance, OMOP data, synthetic data.

Available supplementary support: Analytics, Model build, validation and refinement; A.I.; Data partner support for ETL (extract, transform and load) process, Clinical expertise, Patient and end-user access, Purchaser access, Regulatory requirements, Data-driven trials, “fast screen” services.

Background. Chronic obstructive pulmonary disease (COPD) is a debilitating lung condition characterised by progressive lung function limitation. COPD is an umbrella term and encompasses a spectrum of pathophysiologies including chronic bronchitis, small airways disease and emphysema. COPD caused an estimated 3 million deaths worldwide in 2016, and is estimated to be the third leading cause of death worldwide. The British Lung Foundation (BLF) estimates that the disease costs the NHS around £1.9 billion per year. COPD is therefore a significant public health challenge. This dataset explores the impact of hospitalisation in patients with COPD during the COVID pandemic.

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. There are particularly high rates of physical inactivity, obesity, smoking & diabetes. The West Midlands 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.

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 hospitalised patients admitted to UHB during the COVID-19 pandemic first wave, curated to focus on COPD. Longitudinal & individually linked, so that the preceding & subsequent health journey can be mapped & healthcare utilisation prior to & after admission understood. The dataset includes ICD-10 & SNOMED-CT codes pertaining to COPD and COPD exacerbations, as well as all co-morbid conditions. Serial, structured data pertaining to process of care (timings, staff grades, specialty review, wards), presenting complaint, all physiology readings (pulse, blood pressure, respiratory rate, oxygen saturations), all blood results, microbiology, all prescribed & administered treatments (fluids, nebulisers, antibiotics, inotropes, vasopressors, organ support), all outcomes. Linked images available (radiographs, CT).

Available supplementary data: More extensive data including wave 2 patients in non-OMOP form. 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.

Background: The Coronavirus disease (COVID-19) has emphasised the critical need to investigate the mental well-being of healthcare professionals working during the pandemic. It has been highlighted that healthcare professionals display a higher prevalence of mental distress and research has largely focused on frontline professions. Social restrictions were enforced during the pandemic that caused rapid changes to the working environment (both clinically and remotely). The present study aims to examine the mental health of a variety of healthcare professionals, comparing overall mental wellbeing in both frontline and non-frontline professionals and the effect of the working environment on mental health outcomes.

Method: A cross-sectional mixed methods design, conducted through an online questionnaire. Demographic information was optional but participants were required to complete: (a) Patient Health Questionnaire, (b) Generalised Anxiety Disorder, (c) Perceived Stress Scale, and (d) Copenhagen Burnout Inventory. The questionnaire included one open-ended question regarding challenges experienced working during the pandemic.

Procedure:
Upon ethical approval the online questionnaire was advertised for six weeks from 1st May 2021 to 12th June 2021 to maximise the total number of respondents able to partake. The survey was hosted on the survey platform “Online Surveys”. It was not possible to determine a response rate because identifying how many people had received the link was unattainable information. The advert for the study was placed on social media platforms (WhatsApp, Instagram, Facebook and Twitter) and shared through emails.

Participants were recruited through the researchers’ existing professional networks and they shared the advertisement and link to questionnaire with colleagues. The information page explained the purpose of the study, eligibility criteria, procedure, costs and benefits of partaking and data storage. Participants were made aware on the information page that completing and submitting the questionnaire indicated their informed consent. It was not possible to submit complete questionnaires unless blank responses were optional demographic data. Participants were informed that completed questionnaires could not be withdrawn due to anonymity.

The questionnaire consisted of four sections: demographic data, mental health information and the four psychometric tools, PHQ-9, GAD-7, PSS-10 and CBI. Due to the sensitive nature of this research, only the psychometric measures required an answer for each question, thus all demographic information was optional to encourage participant contentment. Once participants had completed the questionnaire and submitted, they were automatically taken to a debrief page. This revealed the hypothesis of the questionnaire and rationalised why it was necessary to conceal this prior to completion. Participants were signposted to mental health charities and a self-referral form for psychological support. Participants could contact the researcher via email to express an interest in the results. It was explained that findings would be analysed using descriptive statistics to investigate any correlations or patterns in the responses. Data collected was stored electronically, on a password protected laptop. It will be kept for three years and then destroyed.

Instruments: PHQ-9, GAD-7, PSS-10 and CBI.

Other questions included:

Thank you for considering taking part in the questionnaire! Please remember by completing and submitting the questionnaire you are giving your informed consent to participate in this study.

Demographic:

Gender: please select one of the following:

Male Female Non-binary Prefer not to answer

Age: what is your age?

Open question: Prefer not to answer

What is your current region in the UK?

South West, East of England, South East, East Midlands, Yorkshire and the Humber, North West, West Midlands, North East, London, Scotland, Wales, Northern Ireland Prefer not to answer

Ethnicity: please select one of the following:

White English, Welsh, Scottish, Northern Irish or British Irish Gypsy or Irish Traveller Any other White background Mixed or Multiple ethnic groups White and Black Caribbean White and Black African White and Asian Any other Mixed or Multiple ethnic background Asian or Asian British Indian Pakistani Bangladeshi Chinese Any other Asian background Black, African, Caribbean or Black British African Caribbean Any other Black, African or Caribbean background Other ethnic group Arab Option for other please specify Prefer not to answer

Employment/environment:

What was your employment status in 2020 prior to COVID-19 pandemic?

Please select the option that best applies. Employed Self-employed Unpaid work (homemaker/carer) Out of work and looking for work Out of work but not currently looking for work Student Volunteer Retired Unable to work Prefer not to answer Option for other please specify

What is your current employment status?

Please tick the option that best applies. Employed Self-employed Unpaid work (homemaker/carer) Out of work and looking for work Out of work but not currently looking for work Student Volunteer Retired Unable to work Prefer not to answer Option for other please specify

What is your healthcare profession/helping profession?

Please state your job title. Open question

How often did you work from home before the COVID-19 pandemic?

Not at all, rarely, some, most, everyday Option for N/A

How often did you work from home during the first UK national lockdown for COVID-19?

Not at all, rarely, some, most, everyday Option for N/A

How often did you work from home during the second UK national lockdown during COVID-19?

Not at all, rarely, some, most, everyday Option for N/A

How often have you worked from home during the third UK national lockdown during COVID-19?

Not at all, rarely, some, most, everyday Option for N/A

How often are you currently working from home during the COVID-19 pandemic?

Not at all, rarely, some, most, everyday Option for N/A

Mental health:

How would you describe your mental health leading up to the COVID-19 pandemic?

Excellent, Very good, Good, Fair, Poor

How would you describe your mental health during the COVID-19 pandemic?

Excellent, Very good, Good, Fair, Poor

What have been the main challenges working as a healthcare professional/helping profession during COVID-19 pandemic? Open question

Data analysis: Firstly, any missing data was checked by the researcher and noted in the results section. The data was then analysed using a statistical software package called Statistical Package for the Social Sciences version 28 (SPSS-28). Descriptive statistics were collected to organise and summarise the data, and a correlation coefficient describes the strength and direction of the relationship between two variables. Inferential statistics were used to determine whether the effects were statistically significant. Responses to the open-ended question were coded and examined for key themes and patterns utilising the Braun and Clarke (2006) thematic analysis approach.

Ethical considerations: The study was approved by the Health Science, Engineering and Technology Ethical Committee with Delegated Authority at the University of Hertfordshire.

The potential benefits and risks of partaking in the research were contemplated and presented on the information page to promote informed consent. Precautions to prevent harm to participants included eligibility criteria, excluding those under eighteen years older or experiencing mental health distress. As the questionnaire was based around employment and the working environment, another exclusion involved experiencing a recent job change which caused upset.

An anonymous questionnaire and optional input of demographic data fostered the participants’ right to autonomy, privacy and respect. Specific employment and organisation or company information were not collected to protect confidentiality. Although participants were initially deceived regarding the hypotheses, they were provided with accurate information about the purpose of the study. Deceit was appropriate to collect unbiased information and participants were subsequently informed of the hypotheses on the debrief page.

DECOVID, a multi-centre research consortium, was founded in March 2020 by two United Kingdom (UK) National Health Service (NHS) Foundation Trusts (comprising three acute care hospitals) and three research institutes/universities: University Hospitals Birmingham (UHB), University College London Hospitals (UCLH), University of Birmingham, University College London and The Alan Turing Institute. The original aim of DECOVID was to share harmonised electronic health record (EHR) data from UCLH and UHB to enable researchers affiliated with the DECOVID consortium to answer clinical questions to support the COVID-19 response.   ​​   ​​The DECOVID database has now been placed within the infrastructure of PIONEER, a Health Data Research (HDR) UK funded data hub that contains data from acute care providers, to make the DECOVID database accessible to external researchers not affiliated with the DECOVID consortium.  

This highly granular dataset contains 256,804 spells and 165,414 hospitalised patients. The data includes demographics, serial physiological measurements, laboratory test results, medications, procedures, drugs, mortality and readmission.

Geography: 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 & > 120 ITU bed capacity. UCLH provides first-class acute and specialist services in six hospitals in central London, seeing more than 1 million outpatient and 100,000 admissions per year. Both UHB and UCLH have fully electronic health records. Data has been harmonised using the OMOP data model. Data set availability: Data access is available via the PIONEER Hub for projects which will benefit the public or patients. This can be by developing a new understanding of disease, by providing insights into how to improve care, or by developing new models, tools, treatments, or care processes. Data access can be provided to NHS, academic, commercial, policy and third sector organisations. Applications from SMEs are welcome. There is a single data access process, with public oversight provided by our public review committee, the Data Trust Committee. Contact pioneer@uhb.nhs.uk or visit www.pioneerdatahub.co.uk for more details.

Available supplementary data: Matched controls; ambulance and community data. Unstructured data (images). We can provide the dataset in other common data models and can build synthetic data to meet bespoke requirements.

Available supplementary support: Analytics, model build, validation & refinement; A.I. support. Data partner support for ETL (extract, transform & load) processes. Bespoke and “off the shelf” Trusted Research Environment (TRE) build and run. Consultancy with clinical, patient & end-user and purchaser access/ support. Support for regulatory requirements. Cohort discovery. Data-driven trials and “fast screen” services to assess population size.

OMOP dataset: Hospital COVID patients: severity, acuity, therapies, outcomes Dataset number 2.0

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 OMOP 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. This is a subset of data in OMOP format.

Scope: All COVID swab confirmed hospitalised patients to UHB from January – August 2020. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. 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.

Available supplementary data: Health data preceding & following admission event. Matched “non-COVID” controls; ambulance, 111, 999 data, synthetic data. Further OMOP data available as an additional service.

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.

BackgroundThe outcome prioritisation tool (OPT) is a simple tool to ascertain the health outcome priorities of people with MLTC. Use of this tool in people aged under 65 years with MLTC has not previously been investigated. This study aimed to investigate the feasibility of using the OPT in people with MLTC aged 45 years or above, in a multi-ethnic primary-care setting and describe the health outcome priorities of people with MLTC by age, clusters of long-term conditions and demographic factors, and to investigate any differences in prioritisation in light of the COVID-19 pandemic.MethodsThis was a multi-centre cross-sectional study using a questionnaire for online self-completion by people aged 45 years or above with MLTC in 19 primary care settings across the East Midlands, UK. Participants were asked to complete the OPT twice, first from their current perspective and second from their recollection of their priorities prior to COVID-19.ResultsThe questionnaire was completed by 2,454 people with MLTC. The majority of participants agreed or strongly agreed that the OPT was easy to complete, relevant to their healthcare and will be useful in communicating priorities to their doctor. Summary scores for the whole cohort of participants showed Keeping Alive and Maintaining Independence receiving the highest scores. Statistically significant differences in prioritisation by age, clusters of long-term conditions and employment status were observed, with respondents aged over 65 most likely to prioritise Maintaining independence, and respondents aged under 65 most likely to prioritise Keeping alive. There were no differences before or after COVID-19, or by ethnicity.ConclusionsThe OPT is feasible and acceptable for use to elicit the health outcome priorities of people with MLTC across both middle-aged and older age groups and in a UK setting. Individual factors could influence the priorities of people with MLTC and must be considered by clinicians during consultations.

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.

Context

The key results for the data collected on the number and percentage of VTE risk assessments on inpatients aged 16 and over admitted to NHS-funded acute care (NHS trusts, NHS foundation trusts and independent sector providers) in quarter 1 (Q1) 2019/20 are: England continues to achieve the 95% NHS Standard Contract threshold. Of the 3.8 million admitted inpatients aged 16 and over for whom data was reported in this collection, 3.7 million (96%) were risk assessed for VTE on admission. From Q4 2015/16 to Q4 2016/17 the percentage of inpatients risk assessed for VTE was stable at 96%. The results for Q1 2017/18 showed a reduction of 1% with 95% of patients being risk assessed for VTE and this remained static until Q4 2017/18. In Q1 2018/19 the percentage of patients being risk assessed for VTE increased to 96% but decreased again in Q2 2018/19 to 95%. In Q3 2018/19 performance increased to 96% and remained at 96% in Q4 2018/19. From April 2019 the data collection changed to include inpatients aged 16 and over at the time of admission. In Q1 2019/20 the percentage of inpatients risk assessed was 96%. In Q1 2019/20, the percentage of admitted inpatients aged 16 and over at the time of admission risk assessed for VTE was 96% for NHS acute care providers and 98% for independent sector providers. NHS acute care providers carried out about 97% of all VTE risk assessments. Six regions (North East and Yorkshire, North West, Midlands, East of England, London and South East) achieved the 95% NHS Standard Contract operational standard in Q1 2019/20. The South West did not meet the operational standard and risk assessed 94.7% of inpatients. In Q1 2019/20, 80% of providers (240 of the 299 providers) carried out a VTE risk assessment for 95% or more of their admissions (the NHS Standard Contract operational standard). This breaks down as 72% of NHS acute providers (106 of 147) and 88% of independent sector providers (134 of 152). Of the 59 providers (20%) that did not achieve the 95% operational standard in Q1 2019/20, 76% (45 of 59) risk assessed between 90% and 95% of total admissions for VTE. https://improvement.nhs.uk/resources/vte-risk-assessment-q1-201920/

Content

Venous thromboembolism (VTE) risk assessment: Q1 2019/20. The venous thromboembolism (VTE) risk assessment data collection is used to inform a national quality requirement in the NHS Standard Contract for 2019/20, which sets an operational standard of 95% of inpatients (aged 16 and over at the time of admission) undergoing risk assessments each month. https://improvement.nhs.uk/resources/vte-risk-assessment-q1-201920/ The official statistics for VTE risk assessment in England for quarter 1 (Q1) 2019/20 (April to June 2019) produced by NHS Improvement were released on 4 September 2019 according to the arrangements approved by the UK Statistics Authority.

Acknowledgements

https://improvement.nhs.uk/resources/vte-risk-assessment-q1-201920/

Photo by Edwin Ashitendoh on Unsplash

Inspiration

Patients that are not educated on the signs and symptoms of VTE at hospital discharge. Doctors MUST not forget to explain their patients about the medication, so that many deaths can be avoided.

The incidence of VTE in COVID-19 patients is not well established. Reports have ranged between 1.1% in non-ICU hospital wards to 69% in ICU patients screened with lower extremity ultrasound. Small sample sizes, differences in patient characteristics, co-morbidities, hospital and ICU admission criteria, criteria for diagnostic imaging, and COVID-19 therapies likely contribute to this wide range of estimates. Like other medical patients, those with more severe disease, especially if they have additional risk factors (e.g. older, male, obesity, cancer, history of VTE, comorbid diseases, ICU care), have a higher risk of VTE than those with mild or asymptomatic disease. VTE rate in outpatients has not been reported. https://www.hematology.org/covid-19/covid-19-and-vte-anticoagulation

Tuberculosis (TB) is caused by a bacterium called Mycobacterium tuberculosis.  TB remains a significant global health problem. The UK has one of the highest rates of TB in Europe, with almost 5000 new cases notified in 2019. Within the UK, Birmingham and the West Midlands are particular hotspots for TB, with over 300 cases of active disease and approximately 10 times that of new latent infections diagnosed each year.

Birmingham and the West Midlands have experienced particularly high rates of COVID-19 during the pandemic and there is increasing evidence that individuals of Black, Asian and minority ethnicities (BAME) experience the most significant morbidity and highest mortality rates due to COVID-19. These groups also experience the highest burdens of TB, both in the UK and overseas.

Epidemiological data suggests that current and previous tuberculosis (TB) increase the risk of COVID-19 mortality and severe disease. There is also evidence of immunopathogenic overlap between the two infections with in vitro studies finding that SARS-CoV-2 infection is increased in human macrophages cultured in the inflammatory milieu of TB-infected macrophages.

This dataset would enable a deeper analysis of demography and clinical outcomes associated with COVID-19 in patients with concurrent TB.

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 hospitalised patients admitted to UHB during the COVID-19 pandemic, curated to focus on Mycobacterium tuberculosis and SARS-CoV-2. 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 acute care process (A&E, triage, IP, ITU admissions), presenting complaint, DNAR teal, all physiology readings (AVPU scale, Covid CFS, blood pressure, respiratory rate, oxygen saturations and others), all blood results, imaging reports, all prescribed & administered treatments, all outcomes.

Available supplementary data: Matched controls; ambulance, OMOP 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.

Community acquired pneumonia (CAP) is a leading cause of hospital admission, and in older adults has high rates of mortality and complications. CAP is associated with increased long-term mortality and loss of independence for older adults. CAP typically affects older adults with co-morbidities- a group who have largely shielded throughout the winter period. This seems to have reduced rates of transmissible disease in vulnerable people. Complications such as sepsis, and empyema (infected fluid around the lung) prolong hospital admission, result in additional interventions in hospital and have higher mortality than CAP alone. The causative agents for CAP are often poorly identified in real world clinical practice. These data allow the investigation of the different ways in which COVID-19 has impacted on existing health conditions, how often causative agents were identified in real-world practice and the sensitivities of the bacteria, which antibiotics were used and patient outcomes.

PIONEER geography The West Midlands (WM) has a population of 5.9 million & includes a diverse ethnic & socio-economic mix (42% non-white within Birmingham).

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 hospitalised patients admitted to UHB before and during the COVID-19 pandemic, curated to focus on Community Acquired Pneumonia. 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 (timings, admissions, readmissions and discharge outcomes, physiology readings (heart rate, blood pressure, NEWS2 score, SEWS score, AVPU score), blood results and flags for microbiology and surgical data. Comparing the burden of hospitalised community acquired pneumonia (CAP) before and during COVID-19 pandemic.

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.

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. The pathophysiology of frailty is poorly understood. 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 informed decision making about treatment.

This dataset from 01-03-2020 to 01-04-2022 of 327,346 patients admitted during all waves of the COVID pandemic both with and without COVID-19. The dataset includes granular demographics, frailty scores, physiology and vital signs, all care contacts and investigations (including imaging), all medications including dose and routes, care outcomes, length of stay and outcomes including readmission and mortality.

Geography: The West Midlands (WM) has a population of 6 million & includes a diverse ethnic & socio-economic mix. 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 & > 120 ITU bed capacity. 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”. 

Data set availability:  Data access is available via the PIONEER Hub for projects which will benefit the public or patients.  This can be by developing a new understanding of disease, by providing insights into how to improve care, or by developing new models, tools, treatments, or care processes.  Data access can be provided to NHS, academic, commercial, policy and third sector organisations.  Applications from SMEs are welcome.  There is a single data access process, with public oversight provided by our public review committee, the Data Trust Committee.  Contact pioneer@uhb.nhs.uk or visit www.pioneerdatahub.co.uk for more details. 

Available supplementary data: Matched controls; ambulance and community data. Unstructured data (images).  We can provide the dataset in OMOP and other common data models and can build synthetic data to meet bespoke requirements. 

Available supplementary support: Analytics, model build, validation & refinement; A.I. support.  Data partner support for ETL (extract, transform & load) processes.  Bespoke and “off the shelf” Trusted Research Environment (TRE) build and run.  Consultancy with clinical, patient & end-user and purchaser access/ support.  Support for regulatory requirements.  Cohort discovery. Data-driven trials and “fast screen” services to assess population size.

Background. 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 pneumonitis, adult respiratory distress syndrome (ARDS) & death. Many patients required ventilatory support including high flow oxygen, continuous positive airway pressure and intubated with or without tracheotomy. Different centres took different approaches to care delivery depending on ITU bed availability. This secondary care COVID OMOP dataset contains granular ventilatory, demographic, morbidity, serial acuity and outcome data 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. ITU capacity increased to 250 beds during the COVID pandemic. 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. This data is in the OMOP format.

Scope: All COVID swab confirmed hospitalised patients to UHB from January – September 2020. The dataset includes highly granular patient demographics & co-morbidities taken from ICD-10 & SNOMED-CT codes. Serial, structured data pertaining to care process (timings, staff grades, specialty review, wards), severity, ventilatory requirements, 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: More extensive data including wave 2 patients in non-OMOP form. 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.

Chronic obstructive pulmonary disease (COPD) is a debilitating lung condition characterised by progressive lung function limitation. COPD is an umbrella term and encompasses a spectrum of pathophysiologies including chronic bronchitis, small airways disease and emphysema. COPD caused an estimated 3 million deaths worldwide I each year, and is estimated to be the third leading cause of death worldwide. The British Lung Foundation (BLF) estimates that the disease costs the NHS around £1.9 billion per year. COPD is therefore a significant public health challenge. This dataset explores the impact of hospitalisation and service use in patients with COPD during the COVID pandemic.

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 hospitalised patients admitted to UHB during the COVID-19 pandemic and elective service users, curated to focus on COPD. 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 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, OMOP 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.

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.

Chronic respiratory diseases remain one of the leading causes of death from non-communicable disease, with the majority of deaths due to Chronic Obstructive Pulmonary Disease (COPD). COPD presents a significant healthcare burden and is detrimental to quality of life. Currently, there are no disease modifying treatments.

Further to the burden of stable COPD, patients experience acute exacerbations (AECOPD), defined as an acute worsening of symptoms which requires a change in treatment. These are important events, associated with increased mortality, morbidity and long-term health impacts. Patients who exacerbate frequently are more likely to have a faster decline in lung function, have a lower quality of life and experience adverse cardiovascular events. Whilst there are therapies to reduce exacerbation frequency and treat the acute event, options have limited efficacy and have not changed in overall drug class for many years.

Exacerbations are defined by the severity of the symptoms and the treatments involved – so a severe exacerbation is one which requires hospitalisation. However, in our ageing and increasingly frail population, hospitalisation can be required for even a minor event, if a person is already struggling to cope at home.

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 hospitalised patients admitted to UHB between January 2018 to January 2020 curated to focus on COPD exacerbations. 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 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, differing time periods including/excluding COVID-19 pandemic periods.

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.