Since 2007, when a special public information website was set up by the Heart Failure Association (HFA) of the European Society of Cardiology (ESC) intended to help heart failure (HF) patients, their families and carers by offering a broad range of information, reassurance and support, www.heartfailurematters.org has gained even greater international presence and use in the last 18 months, Mark Nicholls reports.
Originally produced in English and German, the website is to include a French language version this summer, a Spanish version to follow, with Dutch, Italian and Russian language versions later.
In addition to supporting HF patients and families, it is also a tool to assist nurses and primary care physicians. Professor Kenneth Dickstein (pictured), immediate past President of the HFA who helped to drive the establishment of the website, said: ‘The site is doing very, very well with about 1,000 hits a day. It is innovative, user-friendly and has something for everybody. There is information on the warning signs of heart failure, medication sheets, animations and suggestions for the questions patients should ask their doctors that can be downloaded and printed out. Patients want to get very practical information in a digestible way at their own pace. It is very different to sitting down with a doctor or nurse and having them say I’m going to tell you about heart failure.’ People can view the site and absorb the information in their own home, he said, so they can return to it whenever, and share it with their families.
Anna, the site’s animated vocal guide, helps users navigate through the information. ‘With the website they find the information they need and that makes a lot of difference to people,’ Prof. Dickstein added. ‘Nothing relaxes patients more than feeling they are empowered with a degree of understanding. Patients also need to understand why it is important to adhere to treatment recommendations. It’s also important for people to see that others are experiencing what they are experiencing.’
Cardiologists, nurses and primary care physicians from the HFA of the ESC have been involved in the ongoing development of the site, which also offers information on living with HF, drugs, devices and diagnoses as well as videos and patients’ stories.
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