The role of health data in restart and recovery

Our Director Liz Sapey reflects on the significant contributions that health data has made to the UK’s pandemic response, and the impact data will have on post-Covid research. This piece was written as part of the Birmingham Health Partners and ABPI ‘Clinical Research Restart & Recovery Resource‘, which has been co-produced with patient involvement leads and NHS partners, as a useful aid to sites and sponsors across the UK who are restarting non-Covid research studies and trials as part of post-pandemic recovery.  

In the past year, PIONEER and our sister hubs had to rapidly switch their focus to supporting the UK’s response to the Covid-19 pandemic, and nowhere was this more relevant than in acute care which bore the brunt of the disease.

PIONEER led 12 projects across NHS, academia and industry, including designing and implementing a fully electronic screening and management system, and also developed a real-time Covid-19 dashboard which provided a fast-track screening tool for nationally-prioritised clinical trials. The dashboard has (as at April 2021) supported more than 10,000 recruitments for the NIHR Clinical Research Network.

PIONEER also mobilised an alliance with University College London, UCL Hospitals and the Alan Turing Institute to form DECOVID, which curated and housed matched Covid data from the four UHB hospitals with UCLH. These data were used to answer freely submitted questions (an ‘Open Science’ approach) with analysts and researchers across the country focusing on varying aspects of wave 1, 2 and 3 disease. Separately, PIONEER shared Birmingham Covid-19 data with other academic centres and organisations including the West Midlands Applied Research Collaborative, ONS, and the BHF Cardiovascular HIC, contributing to national research priorities.

As a result of the first year of Covid-19, PIONEER believes there are four critical ways in which health data can not only facilitate the swifter reopening of clinical trials, but also streamline and improve clinical trial design moving forwards.


  • Use real-world data to inform fast-screen feasibility studies and identify whether the relevant participant population exists in sufficient numbers


PIONEER is one of the most complete records of acute healthcare journeys available for research innovation. Our data is condition- and disease-inclusive: it focuses on the patient in their entirety without a disease or organ-based approach, so PIONEER captures a wealth of data including: reason for seeking care; medical history; physiology readings; imaging reports; severity and complications; treatment plan; and outcomes and follow-up.

Covering the large, stable and diverse Birmingham and West Midlands population initially, PIONEER currently holds approximately 21 years of longitudinal data on over 1 million patients, including 70m drug administrations, 100m blood pressure readings, and 200m blood test results.

Interrogating data on this extensive scale can help design highly specific protocols, select the most appropriate recruiting sites for trials and ensure the diversity required of clinical trials.


  • Increase use of e-capture for monitoring and self-reporting of symptoms


With patients unable or reluctant to attend clinic for consenting and follow-up appointments, it may be time to consider when in-person visits are genuinely necessary. E-consenting could be achieved using secure videoconferencing platforms and electronic forms, while the steady stream of advances in wearable technologies and remote patient monitoring could negate the need for participants to attend as many visits as they have done in the past. This is less onerous for patients and allows clinical trial data to be gathered even if clinical facilities are out of bounds or clinicians redeployed.


  • Implement remote and community interventions


Some clinic visits are of course inevitable for trial participants – for example in order to take blood or X-rays. But does a large hospital always need to be the destination? Could Principal Investigators ‘outsource’ such investigations to the patients’ own GP, community healthcare facilities and walk-in centres, home visits or even via private centres? In the short term, patients may feel more reassured visiting a ‘Covid-secure’ environment while in the longer term, patient convenience and reduced carbon footprint are just two of the benefits.

Providing there is appropriate, secure IT infrastructure in place to send results directly to the trial hub, both community and self-monitoring offer tangible benefits to clinical trial leads – both in the wake of Covid-19 and in ‘normal’ times.


  • Engage with patients and members of the public


As already outlined in this resource, the patient voice remains critical to high quality research and clinical trials. Throughout the pandemic, PIONEER has worked with its Data Trust Committee – made up of Patient and Public Involvement and Engagement (PPIE) partners – to set its data access protocols, review all data access requests, and even produce a guide to PPIE for researchers to ensure public involvement takes place throughout the full lifecycle of research. PIONEER, along with its six sister hubs, have proved that PPIE can be successfully undertaken remotely and virtually – not as an ‘add on’, but as an integral part of core business.

Covid-19 represents the only public health crisis most of the UK population will have lived through in close proximity. Not only has the pandemic touched every member of society and given them a unique viewpoint, but it has catalysed greater interest in clinical trials and research among many people who may previously have not had an interest. Evidencing strong PPIE in all clinical trials can only build public trust in research and its outputs.

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