LAUSR

Current clinical cardiovascular disease (CVD) research primarily is ‘about’ patients with CVD but performed by academic researchers with little or no input from the public or patients. As concisely summarised in the Cardiology in Focus article in this issue of Heart, public involvement in research both empowers patients and the public and can point researchers towards critical questions or outcomes important to patients. Public involvement in cardiovascular research also has the potential to reduce global inequity in health research. Even so, it can be daunting for a clinical investigator to actively involve patients, other than as enrolled participants, due to lack of knowledge about why or how to do so. The article by Ramakrishnan and Miller provides practical advice, with links to more detailed information online, that will help researchers effectively involve the public in clinical cardiovascular research; an approach that increasingly is considered an essential element of an ethical and rigorous research study (figure 1). Among adults with congenital heart disease (ACHD), heart failure (HF) is a primary cause of hospitalisation and mortality. In order to better define the healthcare burden of HF in ACHD patients, Burstein and colleagues used data from the US Nationwide Emergency Department Sample and the Nationwide Inpatient Sample which included over 31 million emergency department visits for HF. Although only 0.25% (76 557) had an underlying ACHD diagnosis, patients with ACHD were younger, had higher admission rates, a longer lengthofstay and greater hospital costs. Importantly, mortality was higher in HF patients with ACHD, both in those with single ventricle (6.6%; OR 1.6, 95% CI 1.1 to 2.3) or twoventricle physiology (6.3%; OR 1.4, 95% CI 1.3 to 1.5) compared with patients with HF but without ACHD (5.5%). Over the decade studied (2006–2016), ACHD hospitalisation for HF increased more than for nonACHD patients (figure 2), yet a lower proportion