Patient Information Websites: How do we Assess their Usefulness?

This article refers to ‘heartfailurematters.org, an educational website for patients and carers from the Heart Failure Association of the European Society of Cardiology: objectives, use and future directions’ by K.P. Wagenaar et al., published in this issue on pages 1447–1454. Patients (and their carers) with a range of self-care skills have long been associated with the more effective use of healthcare services and advocated by healthcare policy. Heart failure education when provided within a suitable package of care, improves outcome1 and is a key part of modern heart failure management.2 Information is provided during the clinical encounter and often supported by written material. Information leaflets are relatively cheap to produce and can be adapted locally. However, advances in information and communication technology have transformed the way in which health education can be provided. In response, the Heart Failure Association (HFA) of the European Society of Cardiology has developed a website to provide information on the understanding of heart failure and its treatment, lifestyle modifications and self-monitoring aides: heartfailurematters.org.3 The site also includes short videos of patient views of heart failure. The website was launched in 2007 and initially available only in English. The HFA has now embarked on a programme of translation and currently the website is available in 10 languages. In this issue of the Journal, Wagenaar and colleagues4 aim to provide insight into how the site is accessed, using data from a web analytic tool (Google Analytics). During the five years the authors report on, visitors to the site increased from 416 345 in 2010 to 1 636 368 in 2015. The number of visitors returning to the site also increased and remains at around 10% of the total number of users. The majority of visitors access the site in English or Spanish and are largely from countries outside Europe (United States, Canada and South America). The authors went on to explore how users found the site. The majority (72%) discovered the site from a search list generated in response to search terms related to heart failure stages or heart failure symptoms. Nine percent of visitors typed the uniform resource locator (URL) directly into their search bar. Faced with the global epidemic of heart failure, the authors question why the site has limited visitors in comparison to the number of patients, let alone families, friends and professionals. At first glance, the relatively low number of website visitors may relate to the older age of many patients with heart failure and their possible limited experience of modern methods of communication. However, globally, access to the web is growing, and it is increasingly used to seek health information.5 Therefore there would appear to be other reasons for the limited number of visitors to the site. Not all patients will be interested in exploring health issues for themselves. ‘Patient activation’ is now a recognised concept in self-care. It describes the knowledge, skills and confidence a person has to manage their own health and healthcare.6 Patients with low levels of ‘activation’ will be less interested in their heart failure and less likely to explore the internet for disease-related information. Only the most highly activated will seek out information for themselves.6 Studies in older patients with chronic illness, including patients with heart failure, report moderately low levels of activation, with patients having some understanding of their disease but low levels of knowledge, skills and confidence to seek further information.7, 8 This suggests that many with heart failure will be reliant on their heart failure team to provide information and manage their disease. In addition, by its nature, heartfailurematters.org provides generic heart failure material. This may have limited appeal to those with low levels of activation and who are less able to interpret the information for themselves. The authors found that the majority of visitors arrived at the site through its relevance to their search terms. Fewer than 10% typed the URL directly into their search bar. This suggests that one way to increase visitors to the site includes signposting by clinicians. Patient education is a key component of good heart failure care, it is emphasised in the new heart failure curricula (medical9 and nursing10) and is often a central role of the heart failure nurse. Yet, time spent in direct clinic appointments is increasingly short and alternative methods to support information giving are important. In higher education, the idea of the ‘flipped classroom’ is gaining popularity and this approach could be used to optimise patient education. Using this approach the patient and carer would be directed to key material on the heartfailurematters.org website to view at their own pace and time. Focused discussion of questions arising from the material would take place during the face-to-face clinic time. Analysis of how visitors found the site is notable. Search terms related to heart failure stages and symptoms were the most common but, even when the site appeared on the search page, few clicked on the heartfailurematters.org link. There may be various explanations for this that extend beyond the position of the site on the search engine results page. The internet presents unfiltered health-related information from a broad range of sources. Visitors to websites are often overwhelmed by the volume of information and unsure which to trust. Others appraise for themselves what constitutes ‘good quality’ information by checking the website authorship and the organisation the site is aligned to.11 There are countless websites with heart failure-related information. These include national websites, hospital-based, charity and patient-initiated websites. Directing patients to sources of information will help them locate reliable internet sites. The authors should be applauded for undertaking this study. It is both timely and highly relevant in the face of growing interest in the use of the internet to disseminate information. These findings will add to our understanding of the value of heartfailurematters.org. However, our knowledge of the importance of patient information websites is incomplete. Their effect on self-care behaviours will be measured in a clinical trial in the Netherlands (NCT01755988)12 that will produce important results. Websites are promoted to improve patient empowerment and participation in decision-making. Ultimately, however, their value is likely to rest on how we use them in our interaction with patients and their families. Conflict of interest: none declared.

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