Data circulation: Why access to information needs to be at the heart of cardiology

One look at the headline figures will highlight in no uncertain terms that heart disease remains a significant problem in Scotland.

Heart and circulatory disease cause nearly three in 10 of all deaths in the country or around 17,000 deaths each year – that’s nearly 50 people a day or 1,400 each month.

Ischaemic heart disease, which occurs when coronary arteries become narrowed by a build-up of fatty material within their walls, was Scotland’s single biggest killer in 2019. 

The leading cause of heart attacks, it is responsible for around 6,600 deaths here each year and is described by Colin Berry, a professor in cardiology and imaging at the University of Glasgow, as “a top problem for society”. 

The experts in their field, like Berry, will tell you there is a key tool that can help drive and support improvement in heart disease services across the country. That tool is data.

Fundamentally, addressing the data landscape in heart disease has the potential to transform care and produce better outcomes for patients.

“Ischaemic heart disease or coronary heart disease is Scotland’s biggest killer,” Berry tells Holyrood. “It’s the leading cause of premature illness and death in our community. That makes it a top health priority – a top problem for society. 

“And it turns out that we don’t have in Scotland contemporary audit data on the treatment and outcomes of our patients who are having a heart attack. That is a fact. 

“The Scottish Government is working on that… It is great that this issue is understood and that there’s work in progress, but the reality is we do not have national data. 

“In other words, that means the experience of a patient who has a heart attack in Lerwick or Stornoway, or Glasgow or Dumfries, we don’t know if their care and outcomes are comparable or not. 

“So, there’s one thing about epidemiology, that is the availability of information, and I’ve pointed out gaps there. The second thing is the data can drive and support healthcare improvements. 

“And what is really appealing is not so much the research but the implementation, and to use audit to drive healthcare improvement. So not only do we lack information on audit, but we’re also missing the opportunity to improve the care that we provide for patients across the NHS in Scotland.”

The effective use of data was identified as a priority for the Scottish Government in its heart disease action plan for 2021, which was published in March. 

It has committed to working with Public Health Scotland to deliver a Scottish Cardiac Audit Programme to support audit and improvement of services for people with heart disease.

The accessibility of data for researchers and healthcare professionals has been an often-cited barrier, prompting British Heart Foundation (BHF) Scotland to call for a national approach to mapping, streamlining and standardising data currently collected, as well as improving interoperability of systems.

The organisation has pointed to work at national level relating to cancer, which saw the Innovative Healthcare Delivery Programme (IHDP) and National Services Scotland collaborate to create the Scottish Cancer Registry and Intelligence Service. 

It provides a single point of entry to national cancer data, bringing together a range of cancer indicators presented at Scotland, NHS board and regional cancer network level. 

A BHF Scotland plan said at the beginning of this year: “Given the size and scale of the impact of heart disease in Scotland, and the current dearth of accessible data to support learning, a similar approach should be taken based on the existing infrastructure and expertise developed as part of work relating to cancer.”

Crucially the government has taken heed, detailing plans to establish a platform that enables healthcare professionals and researchers to access the relevant current data and intelligence.
It would allow data from across Scotland, often held in different systems that don’t necessarily speak to one another, to be linked. 

Additionally, it could allow researchers to utilise data to uncover improved strategies for prevention, innovative new therapies and medical breakthroughs that will ultimately improve the lives of people affected by heart and circulatory diseases.

Berry, who is also an honorary consultant cardiologist at Golden Jubilee National Hospital and the Queen Elizabeth University Hospital, was previously involved in a project focusing on patients who presented to hospitals in Glasgow with heart attacks.

The pathway of care can involve transfer between a number of hospitals, and it can be challenging for clinicians to track the patient journey to understand the outcome of their patient. 

Using a unique community health index (CHI), episodes of care and components of data from independent databases could be brought together and analysed to produce valuable insight. 

Berry says: “We were able to link electronic records for one patient… Imagine a room full of separate computers and one patient’s data is distributed between these computers and the computers don’t join up. 

“What we did at scale was to link databases, basically using the CHI number, which is the unique patient identifier but then we pseudo-anonymised. So, we removed the identifiable information, but we were still able to link. 

“We did this at scale. Over a 12-month period, there were 7,700 heart attack episodes in the Greater Glasgow and Clyde area, including the Golden Jubilee. 

“We were able to map the patients’ journeys, their treatments, their outcomes, and we did find associations with social demographics and sex and treatment and outcome.”

It becomes clear that the importance of data in improving patient care and outcomes should not be understated – an idea that is captured by Fiona Strachan, the IHDP’s chief operations officer.

Data ultimately assists in painting a picture of patient pathways, which can then be studied to consider how certain services or aspects of care can be refined, but it needs to be accessible. 

Strachan tells Holyrood: “Whatever goes into patient notes is a record of the care that they’ve had when they’ve attended hospital, GP, clinical nurse specialists. 

“Whenever they’ve attended a clinical visit then something is recorded in their patient record and I think we will build a better picture of how best to treat patients and how best to assess patients if we can make sense of the data that’s collected. 

“By having secure and appropriate access to that data, it then helps us build a picture of the patient pathway to then help improve that. 

“So, you can look, for example, for times from diagnosis to treatment or times from first GP visit to specialist referral and try and see if there’s reasons why that might be slower than expected, are there ways of improving it, are there some patients that can access those services better because of where they live? 

“We can build up a better picture of patient pathways and how we can improve them if we have access to records that we can make sense of.”