Pioneering a new digital platform for primary care surveillance and trials
9 December 2020
Big data COVID-19 Clinical trials Digital health & innovation
Professor Simon de Lusignan, Professor of Primary Care and Digital Informatics, describes how a decades old primary care surveillance system is evolving into a sophisticated digital hub capable of supporting COVID-19 trials and related research.
The Oxford-Royal College of General Practitioners (RCGP) Research and Surveillance Centre (RSC) is an internationally renowned source of information of primary care data, with the first data collection starting from practices in 1957. The use of systematically collected data from general practices for surveillance, including the publication of a weekly return has taken place since 1967. It is one of the longest established primary care sentinel networks in Europe and has grown steadily over the last four years from under 100 to 1,800 practices across England and Wales (population coverage more than 15 million) with an aspiration to return to membership across the four nations.
The network delivers high quality data and is particularly important for conditions that are largely managed in primary care as it is a nationally representative of the population , monitoring infections and respiratory diseases, particularly influenza, and assessing vaccine effectiveness. Our team, based in Oxford, extra de-identified (pseudonymised) data twice-weekly from primary care practices and a bulk extract quarterly. The process we use for pseudonymisation is approved by NHS Digital, and our data is now linked to hospital (Hospital Episode Statistics – HES) and cause of death data, cancer registry, and mental health data.
Responding to the COVID-19 pandemic
The primary output of the RCGP RSC is surveillance of influenza. However, when the novel coronavirus infection (COVID-19) emerged, the RCGP RSC responded by rapidly extending its surveillance work, in addition to the PHE commissioned surveillance, to monitor the geographical spread of the COVID-19 infection in the community, as well as assessing the effectiveness of the containment strategy. With increasing number of GP practices required to deliver COVID-19 surveillance, the Oxford RCGP RSC designed and developed the Oxford Royal College of General Practitioners Clinical Informatics Digital Hub (ORCHID), a cloud network, extending its broader surveillance platform. Coupled with this, we developed a trials platform that integrates with GP practices routinely collecting data for surveillance. To enable this to function, we have developed and rolled out changes to the coding nomenclature to be used in practices. This means that with the inclusion of COVID-19, the GP system suppliers have switched to the Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) in order to record COVID-19 cases, exposure to risk of infection, contact with anyone infected, confirmed COVID-19 case and that the disease has been excluded (negative test).
As part of surveillance, the virology practices within the RCGP RSC network collect nasopharyngeal swabs from people showing acute symptoms of lower respiratory tract infection, across all age groups, in addition to the inclusion criteria for influenza virology surveillance.
We also collect convalescent serology samples from people with confirmed cases of COVID-19 infection in order to identify carriers of the virus in addition to the normal serology surveillance practice. We have reported on the likelihood of which groups of patients are COVID-19 positive, on excess mortality, and the shift from face-to-face consultations to online consultations during the first wave of COVID-19. As part of surveillance, we have also been maintaining a weekly COVID-19 observatory showing incidence of COVID-19 cases across different regions across England, across all age groups and across various patient categories. As part of our efforts to provide feedback to practices, we have developed interactive dashboards where they can track the progress of COVID-19 related activities within the practice at different times.
Adding value to COVID-19 research
One of the three national priority platforms for COVID-19 treatment trials in the UK is the Platform Randomised trial of INterventions against COVID-19 in older people (PRINCIPLE) Trial, led by Professor Chris Butler and our colleagues in the Primary Care Clinical Trials Unit. More than 75% of the recruitment for this trial to date has been through the RCGP RSC network practices, and these participants will be followed up through the ORCHID platform. These initial outputs demonstrate the feasibility of ORCHID to provide an extended national digital health hub.
Similarly, the RCGP practices are involved in patient recruitment for the Remote COVID-19 Assessment in Primary Care (RECAP) study, led by Professor Trisha Greenhalgh and Professor Brendan Delaney, to develop and validate a primary care early warning score that is specific to COVID-19 and based on data collected during a remote GP consultation.
Currently, with the surge in COVID-19 cases and with the second wave upon us, the NHS urgently needs accurate and rapid diagnostic tests to diagnose people with or without the COVID-19 infection and in such circumstances, point-of-care tests are extremely useful in providing advice on self-isolation and treatment. The practices within the Oxford-RCGP RSC network have been testing for COVID-19 since January 2020, with samples sent for laboratory tests. However, with the RAPid Testing fOR COVID-19 (RAPTOR) study, led by Professor Richard Hobbs, our team is involved in comparing the point-of-care tests with the laboratory tests to increase diagnostic efficiency.
Apart from expanding and participating in studies in the UK, the Oxford RCGP RSC is also actively involved in several European funded projects such as the HealthPros (Marie Curie Innovative Training Network), and the I-MOVE network, aiming to obtain epidemiological, clinical and virological information on patients with COVID-19 symptoms in the community.
We are also working with the EHDEN project, which aims to harmonise more than 100 million anonymised health records to enhance our understanding of clinical outcomes for patients within the diverse healthcare systems across EU.
The Oxford-RCGP RSC is a professionally led network which is nationally representative across several demographic features and clinical outcomes. The network has received tremendous positive responses from practices and the size of the network has tripled over the course of the COVID-19 pandemic. The recent development and implementation of the ORCHID database, with near-real time primary care data and the ability to be readily scalable to respond to public health challenges, has been an achievement. Coupling this with a trials platform has enabled us to be add significant value to studies of national and international importance.
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