New paper published on data gaps in electronic health record (EHR) systems
CRIU researchers Anoop Shah and Leilei Zhu, and medical student Jordan Poulos are authors of a new paper just published in The International Journal of Medical Informatics. The aim of the study was to conduct an audit to evaluate the completeness of diagnosis recording in 'problem lists' in a hospital electronic health record (EHR) system during the COVID-19 pandemic.
The problem list is a feature of EHR, which allows diagnoses and other clinical information to be stored in a structured way, with the aim to facilitate handovers and continuity of care, thus supporting clinical decision-making and enabling research.
The main findings of this study concluded that one year after implementation of a comprehensive EHR system at UCLH, the recording of medical history on the structured problem list for inpatients was incomplete, with almost 40% of important diagnoses mentioned only in the free text notes. This figure is comparable to studies carried out at other sites and internationally.
UCLH has begun a project funded by the NIHR to develop natural language processing technology to convert diagnoses entered in free text into coded terms in real time, which will appear in problem lists.
The researchers also identified other ways to close the ‘data gap’ – including through additional training in structured data. The researchers discuss potential reasons for their findings – suggesting that recording diagnoses in free text may have become the established way of working with a new EHR at UCLH, which was difficult to shift later.
Read the open access paper: Poulos J, Zhu L, Shah AD. Data gaps in electronic health record (EHR) systems: An audit of problem list completeness during the COVID-19 pandemic. International Journal of Medical Informatics 2021; 150(104452). https://doi.org/10.1016/j.ijmedinf.2021.104452
New paper looking at the interplay between heart disease and Covid-19
People with heart failure and atrial fibrillation who are hospitalised with Covid-19 are at greater risk of death, according to new findings from CAPACITY-COVID. The paper, published online on medRxiv.org, suggests that heart failure increases the risk of death by around 43%, while atrial fibrillation increases the risk by around 14%.
People with severe heart failure had the highest mortality rate amongst patients with heart disease, but interestingly other heart conditions, including having had a previous myocardial infarction (heart attack), were not related to an increased risk of death – showing that different types of heart disease affect Covid-19 risk differently.
Prof Bryan Williams, Chair of Medicine at University College London (UCL) and Director of Research at UCL Hospitals, who led the UK contribution to the study said: “This study provides important detail on the risk from Covid in people with pre-existing heart diseases and shows that for most heart conditions there is no increased risk of death in people hospitalised with Covid but for those with more severe heart failure or to a lesser extent, those with atrial fibrillation, the risk of death is increased. This helps refine our understanding of particular at risk populations for preventive strategies such as priority vaccination programmes.”
Prof Folkert Asselbergs, Consultant Cardiologist at University Medical Center Utrecht, is leading the European study overall.
Researchers monitored the disease progression of more than 10,000 patients hospitalised with Covid-19 in 16 countries across Europe between March and November 2020. They compared data from patients with and without heart disease to gain more insight into the role of these diseases in Covid-19 patients. Patients were followed from hospital admission to discharge.
The study, which was designated a National Institute for Health Research/British Heart Foundation Covid flagship research programme, also found:
- Mortality risk increased with age, both in patients with heart disease and those without
- There were no differences seen in Covid-19 symptoms (e.g. fever, cough, shortness of breath) between patients with heart disease and those without heart disease
- Complaints of smell loss – known to be a symptom of Covid-19 – occurred mainly in younger patients and much less in patients over 65
Prof Folkert Asselbergs, who is also Director of the UCLH BRC Clinical and Research Informatics Unit, said: “A key finding was that different types of heart disease affect mortality risk differently – so we shouldn’t necessarily talk about people with heart disease as one homogenous group when it comes to discussing risk.”
A key follow up piece of work will look at the long term effects of Covid-19 on the heart. To study this, Covid-19 patients who have been in hospital for Covid-19 will have ultrasound scans over time, and will also be surveyed.
This will shed light on whether there is an increased risk of heart disease in the years after hospitalisation and how often long-term complaints such as palpitations and chest pain occur.
Prof Asselbergs said: “This is a crucial area to explore as we go forward, because Covid-19 is still a new disease, and we will want to keep an eye on what impact it might have on people in 5, 10 or 20 years’ time – or even longer.”
Data requests for COVID-19-related initiatives
The Data Explorer (DEX) is a new platform developed by the Clinical and Research Informatics Unit (CRIU) to formally request access to health data which a UCLH member of staff (including honorary members) would not normally have access to.
During the pandemic peaks, we put in place a streamlined process for COVID-19-related initiatives, to rapidly review and support information needs. The requester was asked to complete a one-page form, including details of the people involved and the required data points. Then, the now-defunct COVID-19 Data Access Committee (DAC) was tasked with reviewing each request and further liaise with the requester should any questions arise concerning their data needs.
For enquiries on data access specifically involving COVID-19-related work, please contact the Joint Research Office: uclh.randd@nhs.net.
For assistance with the use of DEX or other questions about the platform, please contact the DEX team: uclh.dex@nhs.net.
COVID-19 Data Access Committee (DAC)
This now-defunct UCLH committee was created in April 2020 to assess, authorise and prioritise all data access initiatives related to COVID-19 response. The DAC also acted as a sub-committee of the UCLH COVID-19 Research Strategy and Compassionate Treatment Group, and during the pandemic peaks used to meet twice-weekly.
HIC and COVID-19
Since the start of the coronavirus pandemic, the NIHR Health Informatics Collaborative (HIC) Cardiovascular theme has been leading on a data collaboration to allow cardiovascular questions to be answered in relation to COVID-19.
As part of the HIC, NHS trusts with BRCs have been collating and sharing routinely-collected data to support research. The HIC trusts have now started to collate and share data to support research into COVID-19. The NIHR HIC COVID-19 dataset includes routinely-collected data on: admissions; blood tests; virology; microbiology; prescribing; medicines administration; orders; vital signs; and critical care. The aim is to collect data for every patient with a COVID test.
The secondary databases will provide data to support collaborative, translational research, particularly in the area of cardiovascular medicine. The curated data will also support other key initiatives, including the CAPACITY-COVID UK registry and DECOVID.
CAPACITY-COVID: UK-wide collection of cardiovascular complications due to COVID-19 infection
This British Heart Foundation flagship project is led by Professor Bryan Williams, Director of the NIHR University College Hospitals Biomedical Research Centre (BRC), with strong regional support.
The Clinical and Research Informatics Unit (CRIU) provides the data hosting infrastructure by establishing a local REDCap instance and server and coordinating data collection and transfer from participating sites, including outputs from the ISARIC-WHO REDCap uploads where applicable.
REDCap, the Clinical Data Entry tool supporting the project, is hosted by AIMES Management Services Ltd.
Can COVID-19 cause acute heart problems?
The research team will use hospital data from across the UK to understand how cardiovascular disease and risk factors increase the risk of developing severe complications in patients affected by COVID-19. Researchers will also explore which acute cardiovascular complications are most common in patients affected by the disease.
This UK project links with the European-wide CAPACITY (Cardiac complicAtions in Patients with SARS Corona vIrus 2 regisTrY; chief investigator Professor Folkert Asselbergs UCL/UMC Utrecht), a collaborative consortium seeking to establish an international registry of patients with COVID-19 with the aim to answer questions on the role of cardiovascular disease in this pandemic. The register is an extension of the Case Record Form that was released by ISARIC (International Severe Acute Respiratory and Emerging Infection Consortium) and WHO (World Health Organization). Since the launch of the registry, 88 centres across 17 countries have registered to join CAPACITY.
International Severe Acute Respiratory and emerging Infection Consortium (ISARIC)
ISARIC is a global federation of clinical research networks whose main purpose is to prevent illness and deaths from infectious disease outbreaks. ISARIC aims to provide a coordinated research response to outbreak-prone infectious diseases.
The emergence of the novel coronavirus (SARS-CoV-2) in December 2019 and the resulting pandemic of a severe coronavirus disease, COVID-19, has led to many ISARIC member networks, who are involved in patient-based research, to generate an evidence-based response to COVID 19.
ISARIC 4C (Coronavirus Clinical Characterisation Consortium) is a UK-wide consortium of doctors and scientists committed to answering urgent questions about COVID-19 quickly, openly, and for the benefit of all. Funded by a grant from UKRI (MRC), ISARIV 4C aims to addresses questions such as:
- How long are people infectious, and what body fluids are infectious?
- What puts people at higher risk of severe illness?
- What is the best way to diagnose the disease?
- Who should we treat early with drugs, and which drugs cause harm?
- Does the immune system in some patients do more harm than good?
- What other infections(such as pneumonia or flu) happen at the same time?
ISARIC 4C is funded to obtain serial samples from 300 cases and single samples for a further 1000. A full list of samples can be found in the UK clinical characterisation protocol. This is a generic, sleeping protocol that is designed to give fast responses with global harmonisation during outbreaks.
ISARIC 4C will share samples to get answers as fast as possible. The intention is to use every drop of every sample to have the biggest possible impact on the COVID-19 crisis. Any investigators with the ability to contribute can access ISARIC 4C data and samples. The ISARIC 4C study will provide a foundation for other studies, such as clinical trials of new treatments, to help better understand the best way to use interventions.
ISARIC 4C is one the UK-wide NIHR Urgent Public Health Priority studies for hospitalised patients with COVID-19.
This work uses data provided by patients and collected by the National Health Services (NHS) of the United Kingdom as part of their care and support #DataSavesLives.
At UCLH, the CRIU team is providing expertise and front-end build in Epic to automate streamline and improve the quality of the data captured directly from the EHR system.
