Assessing the quality of websites providing information on multiple sclerosis: evaluating tools and comparing sites

Abstract

The quality of health information available on the Internet has proved difficult to assess objectively. The Internet's growing popularity as a source of health information, accompanied by the lack of regulation of websites, has resulted in research that has developed and tested tools to evaluate health website quality. However, only a few studies have tested the validity and reliability of these tools. There is a lack of consensus about appropriate indicators with which to operationalize the concept of quality health information. This study aimed to contribute to this research by testing the validity and reliability of existing tools, through their application to websites that provided information about multiple sclerosis. Furthermore, a specific tool for evaluating multiple sclerosis information was developed, contributing to the debate about suitable criteria for measuring the `quality' of health information on the web.

An assessment of the quality of information on stroke and speech and language difficulty web sites

“…An initial tool was designed based on these reported information needs, in two main sections: one for general stroke information and one for SLD information. Finally, a modified version of the HON Code scoring method was devised for the Stroke Tool, as in other studies [14][15][16][17]. Accordingly, there were three possible responses for each question: a 'Yes', 'Partly' and 'No', with each scoring 2, 1, and 0 respectively.…”

“…The evaluation of the web sites was undertaken from an end user perspective, an approach used previously [14][15][16][17]. Although the lead researcher (RS) did not have clinical knowledge, a family member had experienced a stroke, so was able to consider the needs of a PCF experiencing SLD after a stroke.…”

“…Several of these are relatively small web sites, and the hosting organisation may not have the resources to provide fuller information, but are less likely to meet all the information needs specified The variability in the evaluations of the web sites was not unexpected, corresponding as it does with previous studies that have evaluated other conditions. For example, over half of the Multiple Sclerosis sites evaluated in one study scored less than 50% using the Multiple Sclerosis specific tool [17]. In addition, only 28% of Breast Cancer sites met more than 50% of the criteria of their specifically-designed tool [16].…”

How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?

“…As the disease progresses the sufferer may encounter physical impairments including muscle weakness and compromised use of limbs, dizziness and pain as well as cognitive deficits such as short term memory loss 1 .The disease is characterised by periods of relapse and remission with some people going on to develop secondary progressive MS where symptoms gradually worsen and there are fewer or no periods of remission 2 . MS patients face considerable challenges in terms of adjusting to and coping with the disease 3 , but the act of caring for someone with MS brings its own challenges, with carers reporting a wide range of problems, including negative effects on their physical, social, and psychological well-being (see review 4 ).…”

Exercising soft closure on lay health knowledge? Harnessing the declining power of the medical profession to improve online health information

“…However, these higher quality studies add little additional value in addressing the overarching problem. Within the extant body of literature, suggestions to address the widespread low quality of health information across digital media include developing disease-specific tools in contrast with generic assessment tools such as in multiple sclerosis (Harland and Bath, 2007), directing patients to validated, reliable and readable websites (Hanif et al, 2009;Aldairy et al, 2012;O'Neill et al, 2014), compensating the poor quality by directly educating patients (McKearney and McKearney, 2013), and enquiring about the type of online information patients acquire in order to clarify inaccuracies (Tirlapur et al, 2013). However, there is neither evidence for the widespread adoption of these suggestions, nor any objective improvements in the situation.…”