But there’s a bigger picture too. Anonymised information can be aggregated and is vital to researchers looking for new ways to diagnose, prevent and treat many conditions, including heart and circulatory diseases. It is also vital to our ability to understand how well health care services across Scotland are delivered and how we might make improvements.
Many significant breakthroughs in medical research have been based on evidence from this kind of patient data. It’s how we know, for example, that high blood pressure increases the risk of developing heart disease, or the benefits of statins in lowering cholesterol.
Researchers look at the patterns in large sets of data to help them establish what causes diseases and how best to treat them. Access to high quality and accurate data is also crucial for healthcare providers, giving them vital information to enable delivery of the best person-centred care and ensure patient safety.
That means accurate and systematic recording and collation of data is fundamental to addressing the challenge of heart disease. In Scotland, we don’t currently collect or use heart disease data to its full effect for audit purposes at a national level. This creates knowledge gaps that undermine healthcare improvement.
A big challenge with regard to data about heart disease in Scotland is that databases holding this information, such as health outcomes after discharge including rehospitalisation, death, attendances in primary care and pharmacy prescriptions, are not linked. This limits how much we can understand about the healthcare pathways, systems and outcomes for people with heart disease.
Around the world, the highest performing healthcare systems are supported by data sharing, often in real time, to enable person-centred care, quality healthcare delivery, improvement programmes, performance management and research.
A good example in Scotland is the Scottish Care Information – Diabetes Collaboration (SCI-DC) which allows sharing of patient care information between primary and secondary care. Data from hospital specialists and from GPs are transferred into a data warehouse which then allows access to up-to-date information for all those involved in the care of patients with diabetes.
Another good example of harnessing the potential of data is through a disease registry approach to collection. A disease registry is a special database that contains information about people diagnosed with a specific type of disease. There are international examples where this has worked very well. For example, in Sweden, the heart disease registry, known as SWEDE-HEART, has been a useful tool for researchers, while at the same time enabling audit, disclosure of unwarranted variation, support for healthcare improvement and performance management.
Closer to home, registry models exist for other diseases. The Scottish Cancer Registry and Intelligence Service (SCRIS) is a major health intelligence initiative which allows healthcare professionals to access a broad range of cancer-related information from across NHS Scotland to support services and enable improvements in patient outcomes for those affected by cancer. NHS Scotland also has a diabetes register, which each health board contributes to.
Work on a heart attack e-registry in the West of Scotland has informed important quality improvement projects, and identified areas of unwarranted variation. This approach has potential to be used nationally, and across different heart conditions.
These examples show how coordinated and comprehensive approaches to data collection have the potential to lead to direct benefits for patients and allow researchers and clinicians to understand more about the diseases they are tackling.
Right now, there are around 700,000 people in Scotland living with heart and circulatory diseases. These conditions kill around 17,000 people each year. We have to use all the tools in the box to understand and tackle these diseases.
That means we need to see a more ambitious approach to heart disease data collection and collation at a national level. The words sound dry but, in practice, this has the power to drive real and exciting innovation. That’s why we must ensure that we can fully explore its potential to inform and improve diagnosis, treatment and care for people with heart diseases, and to help us beat heartbreak forever.
Kylie Strachan, senior policy and public affairs officer, British Heart Foundation Scotland.