Global Heart Hub's Unite Summit

People with cardiovascular diseases (CVD) have been hit hard by disruption to screening and diagnostics, as well as missed medical appointments and cancelled surgery. But the pandemic has awoken the world’s largest patient community to the need to become vocal advocates.

A survey by the European Patients’ Forum shared at the Global Heart Hub Unite Summit revealed the major impact of the pandemic on almost all patient groups and on individual patients. The majority of patient communities found it difficult to access treatment, with many complaining that governments had failed to provide alternatives when care was disrupted.

‘Patients were asked to put their diseases on hold,’ said Juan José Fernández Romero, Policy Assistant, European Patients’ Forum. There was also a notable lack of patient involvement in pandemic response planning.

‘We found that 63% of patient organisations were not consulted at any stage by governments drafting COVID-19 measures,’ said Mr Fernández Romero. ‘Only 12% of patient groups were represented within their country’s crisis task force – they had no say and no channels to engage with the health system.’ He urged decision-makers to actively involve patients and their carers in co-designing public health measures, and in charting the way forward in the adoption of digital health services.

‘Despite the scale of CVD, the voice of patients has for too long been unheard,’ said Neil Johnson, Executive Director, Global Heart Hub. ‘We need to advocate for change to ensure that the patient perspective is taken into account.’ Opening the first Global Heart Hub UNITE Summit, he said insights from the lived experience of patients are invaluable, but new pathways and mechanisms are needed to ensure patients have a meaningful impact on service design and delivery.