Dr Jennifer Quint and collaborators have been awarded a grant to better understand the patient journey of those with lung disease.

The researchers will be looking at data on admissions to healthcare services to better understand the complete patient journey. This research project is one of five that have been selected by the Health Foundation as part of its £1.6 million open call for research that advances the development and use of data, from national clinical audits and patient registries, as a way to improve healthcare quality in the UK. The project will be led by Dr Quint of the National Heart and Lung Institute, in collaboration with Alex Bottle from the Dr Foster Unit, the National Asthma and COPD Audit Programme (NACAP) at the Royal College of Physicians, and Clinical Practice Research Datalink (CPRD).

“There are so many healthcare questions that you can answer and improve based on data that already exists” Dr Jennifer Quint

The researchers will look at the patient journey of people with chronic obstructive pulmonary disease (COPD), a condition which effects their lungs often causing breathlessness, with an aim to improve their healthcare pathway. COPD has a big impact on a person’s quality of life with flare-ups, called exacerbations, often leading to GP visits and hospital admissions. In fact, over 10% of adult hospital emergency admissions in England have been attributed to acute exacerbation COPD (accounting for around 94,000 admissions annually), and over 30% of COPD patients admitted to hospital with an acute exacerbation COPD are readmitted within three months.

The aim of this study is to find out why people are ending up in hospital with COPD exacerbations, and how appropriate or avoidable that admission was. Whilst also answering questions around what happens when patients come out of hospital – do they see their GP or are they readmitted to hospital? The team will investigate the data on hospital admissions due to COPD exacerbation, from the NACAP COPD Audit, combined with the corresponding information on GP visits from the CPRD. Jennifer is analysis lead for NACAP and her team are familiar with the dataset, however until now they have been unable to combine their findings with the information on visits to primary care professionals. The drive behind this project was a call for the better use of audits, data that we already have, to benefit patient care and has resulted in this project which is a great opportunity to link the two data audits together.

There has been a lot of media coverage around concerns of privacy when it comes to patient data, in particular when DeepMind Health (with its associations to Google) gained access to NHS records. However, the anonymous use of securely processed information can be vital to scientists finding links that can lead to future treatments and even prevent us getting ill in the first place, e.g. realising the health implications of asbestos and smoking. The #datasaveslives campaign was in turn launched to demonstrate the positive impact of health informatics research on public health. This will be one of the first Healthcare Quality Improvement Partnership (HQIP) audits to be linked to primary care data through CPRD, with the potential for other HQIP audits to follow in its footsteps in the future.

Linking these two data sets allows the researchers to look at the entire patient pathway. For instance, with the added primary care data it will become apparent if the patient had been to see their GP prior to hospital admission and was not treated, or, that instead they have not seen a GP at all. This allows the team to look at any variation in care that is taking place along the patient pathway and see where holes may exist in the management of their care.

The CPRD data on primary care shows each admission for an exacerbation but there is a lack of detail of secondary information, such as the severity of the problem and discerning if it conclusively was a COPD exacerbation. Whereas the NACAP COPD audit is a continuous audit of all admissions to hospital for COPD exacerbations (with all but one hospital in the UK taking part). It comprises only six questions, but gives detail about the severity of the admission to provide granularity, so you can then see the entire hospital pathway, from when there was a diagnosis, through any treatment, to when a patient is due to see a doctor next. 

The researchers are aiming to improve the patient journey as there are a lot of COPD admissions that are avoidable. These in turn create a burden on NHS resources and increase costs.  This can be further compounded by patients catching other diseases when in hospital leading to additional treatment being required. By discovering where the gaps are and why people are ending up in hospital when they shouldn’t the team hope to be able to suggest changes to both improve patient care, and reduce unnecessary demand on services. Each time a patient has an exacerbation, lung function declines and this can in turn worsen their condition. Dr Quint commented “It’s about how to change the natural history of the disease”.