Hypertrophic Cardiomyopathy (HCM) is the most common inherited cardiac condition and occurs in 1 in 500 individuals. Most people with the condition will live long, healthy lives but an important minority are at risk of sudden death, heart failure, atrial fibrillation and stroke.
Day to day management of patients is often complicated by the fact relevant data cannot be easily accessed. This may be because it exists in another system in the same hospital, in a different hospital or in a relative’s record.
We are working in the West Midlands to address this so that data can be digitised, integrated and shared with permission across all acute trusts (including the Children’s Hospital and Ambulance Service). Knowing which individuals have HCM, and exactly how they are affected, will allow us to measure the quality of care and then see how it can be improved.
We are aiming to create a Learning Health System into which routinely collected data for direct clinical care is entered once and then reused for various secondary purposes. The West Midlands Clinical Network has supported the work to develop an existing disease-centred registry for HCM so it can be used across the region as part of a broad quality improvement project for this condition.