Using EHRs to build an exciting research infrastructure
Dr Janet Valentine and Dr Jennifer Quint
The widespread digitisation of patient health records across the NHS over the past two decades has created an unprecedented opportunity for health research. More than 90% of the UK population is registered with a GP. As a result, the GP electronic health record (EHR) contains detailed information on symptoms, diagnoses, referrals, tests, treatments and lifestyle factors for the vast majority of patients in the UK. Routinely collected EHRs are a rich source of cradle to grave health data, invaluable for research into conditions, treatments and health outcomes.
The Clinical Practice Research Datalink (CPRD) is a dedicated UK government initiative jointly supported by the Medicines and Healthcare products Regulatory Agency (MHRA) and the National Institute for Health Research (NIHR) to provide EHR data for public health studies. GPs from across the UK have been contributing anonymised patient data to CPRD for almost 30 years. Consequently, CPRD is the database of choice by academic researchers, regulatory agencies and pharmaceutical organisations worldwide for studies into drug safety and effectiveness, the prevalence of risk factors and disease, and to evaluate healthcare uptake and delivery.
Research outputs from CPRD data have increased exponentially over the last decade with an 18% annual growth rate in the last five years alone, and a total of over 1,700 publications to date. This reflects the growing trend for using real-world data to provide evidence on health outcomes in real-world populations.
“Accurate drug safety and clinical guidance rely on studies of representative patient populations, such as from research findings using CPRD patient data. GPs who consent to providing CPRD with their anonymised patient data can be assured that their patient population is part of the evidence base used to inform these guidelines,” explained Janet Valentine, director of CPRD.
The strength of real-world data lies in the generalisability of findings to a broad patient population. In addition to generating valuable observational research findings, EHRs are increasingly being used in innovative ways in interventional research.
Jennifer Quint, (left) from the National Heart & Lung Institute at Imperial College London, uses CPRD data to explore the relationship between Chronic Obstructive Pulmonary Disease (COPD) and vascular outcomes.
“Last year, the group used CPRD primary care data linked to Hospital Episode Statistics and Office for National Statistics mortality data to show differences in incidence, management and mortality rates for a number of vascular outcomes in people with and without COPD. The group are now taking advantage of CPRD primary care data to actively recruit patients to a research trial looking at the effect of environmental exposures on the rate of COPD exacerbations,” said Quint.
Clinical trials often suffer from slow recruitment, meaning up to 50% of trials fail to recruit on time or to target. To tackle this problem, CPRD is utilising anonymised patient EHRs to assess the feasibility of carrying out clinical studies. This information provides researchers with valuable evidence on whether it will be possible to recruit sufficient patients into a proposed trial.
Using this data, potentially eligible patients can be located and then invited by a GP to take part in a consented clinical study. Recent technological advances have enabled EHR data to be captured directly into clinical trial electronic case report forms, reducing data duplication. Additionally, information in the EHR may be used to supplement study-specific data.
There is growing recognition in the potential to generate clinical evidence through the use of real-world data. By supporting research using real-world data, research funders like the NIHR are driving faster translation of scientific discoveries into tangible patient benefits.
Valentine and the team at CPRD are looking towards the future: “With many chronic conditions managed by GPs, there is a huge potential for clinical research within primary care settings. We are building an exciting research infrastructure based on EHRs and underpinned by a network of engaged GP practices. It is our belief that the resulting findings from real-world patient populations can assist healthcare professions in providing routine care.”
More information is available at www.cprd.com
*This blog was originally published on the National Health Executive (NHE) website.
** Dr Janet Valentine is director of the CPRD and Dr Jennifer Quint is clinical senior lecturer in Respiratory Epidemiology, Occupational Medicine and Public Health at Imperial College London's National Heart and Lung Institute.
- Summary:Janet Valentine and Jennifer Quint explain how electronic patient health records (EHRs) provide huge potential for clinical research within primary care settings
Dr Janet Valentine and Dr Jennifer Quint