Evaluation of patient information Internet web sites about menopause and hormone replacement therapy

Abstract

Objectives: To evaluate quality of web based information on the menopause and hormone replacement therapy, to identify whether site ownership is an indicator of both web site and content quality, and therefore to provide guidance for healthcare professionals over which sites are suitable for recommendation to patients. Methods: A search of web sites was conducted using eight commonly used search engines and two key terms (‘menopause’ and ‘hormone replacement therapy’) limited to English language. Thus, a sample of 25 sites (of varied ownership) was generated. Using a specific scoring tool, each site was assessed on factual information provided and quality of site. For each criterion, a score of 1–5 was assigned, and two mean scores were generated. Each site was also assessed in a semi-structured qualitative manner. Results: The mean informational value of the sites sampled was 3.129 (out of a maximum of 5) but with a range of 1.6–4.6. The mean value of the sample for the quality of web sites was higher (3.504) but again over a broad range (2.5–4.5). Certain types of ownership were associated with higher quality sites, including the pharmaceutical industry, community pharmacies, governments, and charities. Conclusions: The information about menopause and HRT on the web is often of dubious calibre, with incomplete information being commonly provided. Therefore it is recommended that healthcare professionals direct women to sites owned by the pharmaceutical industry, community pharmacies, governments, and charities. In doing so it would be prudent to advise women that commercial sites may be biased towards particular products.

Introduction

Currently, many sources, and especially the media, give contradicting information about HRT to women seeking information to make an informed choice The escalating number of highly publicised medical errors further increases the need for information, as patients are less willing to passively accept health professional's advice. Empowering people with knowledge allows them control of their disease-management, and shares the responsibility for decisions made. It has also been suggested that empowerment of patients promotes consumer and evidence-based medicine [1]. Additionally, the Internet may improve compliance and patient satisfaction by enabling participation in discussion groups, providing support and allowing ideas and experiences to be shared [2].

An information void exists, which the Internet has great potential to fill. Research has shown that 73% of Internet users seek health information [3]. The World Wide Web is vast and is growing exponentially. It was estimated, as of February 1999, to contain about 800 million pages containing about 6 terabytes of text data on about 3 million servers [4] with no single engine indexing more than a third of the indexable-web [5]. The Internet offers multimedia forms of information. For example, it allows the combined use of text, hypertext, graphics, animation, audio, video, 3D models and virtual reality simulations. The combination of these different elements should allow better conveyance of information, providing enhanced education for the user [6].

Presently the digital divide is more dramatic than any other inequality in health or income The UK government has highlighted the importance of increasing access to health information on the Internet. Access to the right information at the right time is considered to be a crucial ingredient of modern healthcare [7] and a basic human right. UK online is an initiative aiming to ensure that everyone in the UK has access to the Internet by 2005. It aims to have over 6000 UK online centres by the end of 2002, with all public libraries and walk-in centres providing terminals equipped with staff to train first-time-users, and free training for the unemployed or benefit receivers [8].

However, it should be noted that there are possible disadvantages to the increased patient education potentially offered by the Internet. Even if information is accurate, a site's recommended treatment may not be chosen by health professionals working to limited budgets [9]. For example, although transdermal patches might be a preferable first line treatment of perimenopausal symptoms, they are more expensive than conventional oral preparations, and the benefit gained from use of a patch must be weighed against the increased cost. This has potential to create conflict between the patients informed choice and the prescriber's ability to provide. It is vital to ensure that the web strengthens rather than undermines the clinician–patient relationship by supplementing and reinforcing information with highly accurate and comprehensible material [10], [11], [12].

At present the reliability of information presented on an estimated 100 000 medical web sites is variable [13] with a diversity of authors, ranging from professors to lay persons, thus affecting accuracy and currency of information. Added to this problem is the uncontrolled and uncontrollable access to and dissemination of information [14]. Commercial sites, although looking impressive and authoritative, often offer incorrect or out-of-context information and treatment suggestions which may have adverse or even fatal consequences [15].

With patients often unable to distinguish between what is high quality advice and what is sub-standard, some form of control or assessment criteria could be applied to medical sites to limit possible harm. The public would doubtless welcome assurance of quality, particularly when the information influences health decisions and so directly affects health. Systems are being devised to grade the quality of medical web sites. However, realistically very few sites could be assessed, due to the vast and dynamic nature of the web, and any grade given could be inaccurate within days.

People may access information through trusted search sites or gateways, e.g., OMNI [16], Cochrane [17], DISCERN [18], or government sites such as NHS direct online [19]. These sites claim to filter material, for example, OMNI is “a gateway for evaluated, quality Internet resources in health and medicine’[20]. The National Electronic Library for Health is due for completion in 2002 [21], and has been designed to ease location and provide accreditation of material [10]. However the listings provided on these sites are far from complete [22].

There are several problems concerned with web site evaluation. Firstly, ‘no omniscient detached observer exists who can simultaneously view an article through the eyes of a specialist researcher, doctor, patient, and member of the public, let alone take into account the different perspectives of orthodox and complementary medicine’ [23]. Secondly, it is possible that organisations offering kite marks to guide the public may face litigation for overvaluation of the site by patients harmed by advice provided or conversely for defamation or disparagement where the site is under-rated.

The same critical evaluative skills for assessing web sites are needed as are used for evaluation of any other media [8]. In order to discuss the requirements of a reliable web site, many evaluative systems have been reviewed in order to define the requirements used [8], [24], [25], [26], [27], [28], [29], [30], [31], [32], [33], [34], [35], [36], [37], [38]. It should be noted that not all categories of criteria are of equal importance, in particular, content and accuracy are considered more important than the layout and user-friendliness of a site.

Currently, no published studies exist, evaluating the quality of menopause and hormone replacement therapy web sites, even though menopause affects half of the population at some point during their lives. Only a minority (20–30%) [39] of suitable perimenopausal women accept treatment for symptoms and compliance rate and average duration of treatment fall much shorter than optimum treatment length, with only 5–6% using HRT for over 5 years [40].

In this study the aim was to survey web sites that a ‘typical’ user might access when searching for information on the menopause and HRT. Quality and reliability were assessed, both in terms of factual content and web site design, and the relationship between reliability (including accuracy, completeness and accessibility) and site ownership was evaluated. Therefore, the study facilitates practitioners’ recommendations to patients of reliable information, since dependable reading material that respects the patient–clinician relationship is scarce [10], [11]. It also aims to ascertain whether analysis should be applied to public information sites to ensure safety and precision.