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Rheumatology 2001; 40: 645-651
© 2001 British Society for Rheumatology
Original Papers |
Provision of Internet-based rheumatology education (http://rheuma.bham.ac.uk)
Department of Rheumatology, Division of Immunity and Infection and
2 Cancer Research Campaign Clinical Trials Unit, University of Birmingham, Edgbaston, Birmingham B15 2TT and
1 Department of Rheumatology, Dudley Group of Hospitals NHS Trust, The Guest Hospital, Tipton Road, Dudley, West Midlands DY1 4SE, UK
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Abstract |
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Objectives. The Internet is becoming an important way of delivering medical information, and if used appropriately may assist in improving patients’ self-management of their disease. We have established an arthritis education website (‘Arthritis Help’) and investigated its use over the last 2 yr.
Methods. Computer-generated log-file analysis and on-line questionnaires were used to create user profiles of our website.
Results. An average of 288 people visited our site each day, predominantly from America and the UK (49% of users). The typical questionnaire respondent (n = 770) was an American female with arthritis, aged 30+ yr, accessing the Internet from home. Typically, respondents had previously obtained information from medical staff or in written form, but were now more likely to use the Internet. One hundred and sixty-seven out of 585 respondents found our site to be useful, prompting them to seek more information (29%), change their behaviour or engage in more effective discussions with their physician (15%).
Conclusions. These data indicate that it is possible to use the Internet to deliver medical information to its target audience, and that this process can have some impact on the way disease is self-managed. This information may aid more focused website design to maximize the use and potential benefits of such a resource.
KEY WORDS: Rheumatology, Education, Arthritis, Internet, World Wide Web, Rheumatoid arthritis, Osteoarthritis, Systemic lupus erythematosus.
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Introduction |
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The many forms of chronic rheumatic disease place a huge burden on society and cause a great deal of individual misery. Some 15% of those on a general practioner's list in the UK will consult their doctor with a rheumatic problem each year, accounting for 20–25% of all general practitioner consultations [1]. The chronic nature of these diseases means that there is a great thirst for information from patients and their families.
The traditional hospital-based style of education targets the few patients who reach this system whilst the majority of rheumatic disease is managed in the community. With chronic disease, in which the causes are largely unknown and no cure is available, patients and their families become important partners of health-care professionals, deeply involved in the care process.
Effective partnerships between physician and patient that enable shared decision-making are seen increasingly as important in the delivery of effective rheumatology care [2]. This has been linked to higher patient satisfaction [3] and long-lasting improvement of health outcomes, including pain, depression and self-efficacy [4, 5].
Standard sources of patient information in rheumatoid disease rest heavily on the written form. The Arthritis Research Campaign (UK) found that their rheumatoid arthritis (RA) patient information leaflet increased patients’ knowledge of their condition and decreased both pain and depression [6]. If these self-management courses are delivered remotely, for example by surface mail, they can have a major impact on patient outcome and can reduce the use of medical resources [7]. However, there is some suggestion that this kind of literature may only reach a small proportion of patients affected by chronic arthritis [4]. More effective delivery of information to patients could result from exploiting the rise of the Internet as a global communication medium.
There is already information about rheumatology available on the Internet. In early 1998 a search of the Internet returned 1912 ‘rheumatology’ sites [8]. Of the 154 analysed, only 87 were readily accessible: 67% originated from medical organizations, 51% were interpreted as being specifically targeted at rheumatologists and only 16% were directed at patient education [8]. The number of rheumatology sites had increased to 5978 by December 1998 [9], but there were concerns about the quality of information being presented [8, 9]. This suggests that Internet-based delivery of information to patients, carers and health professionals is rapidly developing but is not necessarily of high quality.
To use the Internet as a medium for medical information, it is important to know how and why people are using it and the best methods for delivering this information to the target audience. We have reviewed the use of our website over the last 2 yr, assessing current trends, creating user profiles and evaluating the preferences and perceptions of users about the service we provide.
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Methods |
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Content
The content of the site was decided by consensus of a multidisciplinary-care rheumatology team frequently called on to deliver educational information during their routine duties. The team included consultant rheumatologists, rheumatology specialist nurses, physiotherapists, occupational therapists, a paediatric rheumatology team, and patients. The information used is based on widely available and, where possible, validated printed material supplied by the Arthritis Research Campaign (UK), support groups and by the Department of Rheumatology, University of Birmingham. The material used encompasses a wide range of rheumatic conditions, including RA, osteoarthritis, systemic lupus erythematosus, vasculitis and paediatric rheumatology. The website provides information about these diseases, their different forms, treatment, and how patients can help to manage their condition. This is achieved using text, graphical illustrations, animations, audiovisual material and downloadable documents, as well as links to other relevant sites. Further information can be obtained from our website (http://rheuma.bham.ac.uk).
The computer system
There are two web servers in our department: a Silicon Graphics Unix workstation running Netscape Enterprise Server (http://rheuma.bham.ac.uk) and a Microsoft Windows NT 4.0 running Internet Information Server 4 (http://webrheum.bham.ac.uk). Both servers are connected to the Internet via the UK academic network (JANET). The Arthritis Help home page (http://rheumb.bham.ac.uk/primer.html) and the main home page (http://rheuma.bham.ac.uk) have been registered with all major search engines and are referenced in the Microsoft Encarta CD-ROM.
Data
Log files (W3C extended log-file format) were recorded by the web servers monitoring site activity. Information collected by these files included date, time, client IP address, URI query (one or more search strings for which the client was seeking a match), user agent (the browser used on the client) and referrer (the site on which the user clicked on a link that brought the user to the site). This information was analysed using the Surf Stats Pro Log file analyser (http://www.surfstats.com).
User questionnaire
A web-based questionnaire was designed to record information provided directly by the user. This information requested covered demographic aspects, why people were using the site, where they previously obtained their information and how they rated the site as an information source (Appendix 1).
Users were asked to fill in the questionnaire using the wording ‘If you find the information useful, or would like to make suggestions, ... fill in our very brief questionnaire. This would help us greatly.’ We did not make answering the questionnaire a formal requirement in order that they could use this resource. We did not deter anyone from using the site or penalize those not willing to divulge what they might consider potentially sensitive information.
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Results |
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Log files
Access
On average, we had 288 visitors to the website each day, staying anywhere between 2 and 4 min (43%), up to 30 min (50%) and even over 1 h (7%). The majority of users visited only once (62%), but 21% returned up to four times and 7% over 10 times.
Location
Review of the log files showed that visits from the USA (38%) and the UK (11%) were the most frequent. Access was not limited to these countries; other users were from Canada (2.2%), Australia (1.9%), Germany (0.6%), The Netherlands (0.6%), New Zealand (0.4%), France (0.2%), Spain (0.2%), Italy (0.2%), Mexico (0.1%), Japan (0.1%), Sweden (0.1%) and Ireland (0.1%).
Active time
The most active period of the week was from Tuesday to Friday (Thursday being the most active day), and this was between the hours of 1 p.m. and 11 p.m. (8–9 p.m. was the most active time) local (GMT) time.
Platforms
In order to access the site, the majority of people used Microsoft products, e.g. a Windows operating system (82%) and Internet Explorer 4 or later (71%). The second most common Internet browser, Netscape 4, was used for only 18% of site hits.
Search engines
Referrals to our site were made directly from search engines as opposed to links from other sites. Excite (31%) was the main search engine used, the majority of hits coming from http://www.excite.co.uk. Other search engines included MSN and Ask Jeeves (11%), Alta Vista (10%), Infoseek and Google (9%), and Yahoo (6%).
Search phrases
The search phrases used are shown in Table 1
. The most frequent was ‘pleurisy’, ‘osteoarthritis’ was the second most frequent, and these were followed by ‘arthritis’ and then ‘rheumatoid arthritis’.
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User questionnaire
Over a 2-yr period, 770 individuals answered all or part of the questionnaire. The most common profile of the respondent to the on-line questionnaire was of an American (Fig. 1) female over 30 yr of age (Fig. 2) suffering from arthritis (rheumatoid or osteoarthritis) (Table 2 ). Respondents were not necessarily newly diagnosed with their condition (there were equal numbers of newly diagnosed/long-term patients). Many of the visitors had seen their physician within the last 6 months (71.4%), approximately equal numbers of patients taking and not taking prescription medication.
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The main reason respondents cited for using the resource was because they had arthritis (482 respondents, 63%) or a friend was suffering from this condition (120 respondents, 16%). The usual sources of information cited were medical staff and other health-care providers (24%), written material (18%), the Internet (16%) and combinations of several of these sources.
The Internet was rated as one of the best sources of information by 223 out of 567 respondents (39%), followed by instruction by medical staff (25%) and written material (16%). If the Internet was used, this was primarily at home (58%), work (15%) or a combination of both. Little use of the Internet was made at medical institutes (<1%) and schools (4%).
When respondents (550) were asked to rate our site, the majority believed it to be either quite useful (50%) or very useful (34%); 16% did not feel that the site was useful. The information we presented prompted 167 out of 585 respondents (29%) to pursue further information, to discuss their treatment further (15%), to change their current behaviour (15%) or to undertake a combination of several of these activities (15%).
When health-care professionals were asked if they would recommend this site to their patients, 84 of the 90 who responded said that they would.
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Discussion |
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The growth of the Internet over the last few years and the increase in the numbers of people using this medium to access medical information suggest that it could help to reshape patient education [10]. A study of Internet use by patients showed that two-thirds of those who searched for information on the Internet talked about it with their physicians, more than half of them reporting that they were more satisfied with their treatment as a result of their searches and subsequent discussion with their physician [10]. The limited amount of high-quality, patient-centred education [8, 9] prompted us to establish the Arthritis Help websites. In order to assess whether it reaches its target audience and to review its impact upon the Arthritis community we conducted an analysis of its use over the last 2 yr.
To achieve this we used two techniques, computer-generated log-file analysis and an on-line questionnaire. These two techniques have benefits and drawbacks. Log-file analysis is an indirect method of gathering technical information (e.g. where the computer used to access the site was located, how referral to the site was made and what software was used to access the site). This method is limited as it cannot obtain user opinions either on the site or its content. We attempted to achieve this using an on-line questionnaire. This method is direct, but requires input from the user and is unlikely to provide technical information. We found that the major problem with our questionnaire was the limited number of respondents (770 at the time of analysing the data). The low number of respondents to the questionnaire compared with the total number of visits recorded by the log files may reflect the way information is accessed on the Internet. Search engines often return many sites relating to a keyword search, but people may only briefly visit a site looking for specific information or out of general interest (this may be confirmed by our data showing that 49% of the users stayed for only 2–4 min). Although these users will be logged, they may pass through sites whilst ‘surfing’ for their information. Therefore our questionnaire may only be answered by the small number of users with a real interest in the information and who stay long enough to answer it.
We invited the users to complete the questionnaire if they found the information useful or wished to make suggestions about the site. The wording may have placed some selection bias on the type of person responding to the questionnaire. However, we did find people answering the questionnaire who did not rate the site as very useful. These were predominantly people suffering from conditions not yet addressed by the site, e.g. polymyalgia rheumatica, gout and scleroderma (A. S. Wilson, unpublished data). We did not want to make it compulsory for users to register profiles of themselves in order to access the sites, as this may have deterred people from using a freely available resource and could also have introduced its own bias on the type of respondent about whom we were gathering information. Therefore, the questionnaire could gather only a snapshot of information about the users. However, by combining the two assessment methods (log files and questionnaires) and trying to relate one to the other (where we could) we were able to attempt to understand how and why people were using our site.
Despite the content being presented solely in English, this did not limit the variety of countries using our site. The most use was from the USA, which could explain the times of highest activity, between 1 p.m. and 11 p.m. (most activity 8–9 p.m.) GMT, and is further confirmed by the large number of US citizens responding to our on-line questionnaire. The typical respondent to the questionnaire was an American female aged 30+ yr with arthritis, which reflects the age and incidence of arthritis [11] and the USA being the biggest user of the Internet [12].
Very few people from countries other then the UK or USA replied to the questionnaire. As more countries gain access to the Internet, an assessment may need to be made of the content of the information, its relevance to the users, how well it is presented and whether the style of presentation affects the way the information is used. This also holds for ethnic subcultures within communities and countries. Information presented in the form of pictorial representations and animated storyboards may be a more effective method of representing complex medical/behavioural information to these groups, and this is where the Internet has the advantage over other communication media.
Results from the questionnaire showed that home use was the most popular, with some access coming from the workplace and a small amount from schools and academic institutes; this was confirmed by the log-file analysis. The large number of commercial organizations accessing the site seemed to represent access via Internet service providers (e.g. AOL) rather than by access from work establishments. There was little use by hospitals and medical establishments despite it being advantageous for these organizations to provide patient education services. There may be two reasons why access from medical institutes was limited: (i) lack of provision of this service, and (ii) most patients are not aware of the extent of information that can be obtained via the Internet. The most common sources of information on disease were medical staff and written material. However, the use of the Internet is continuously increasing; it was rated by our questionnaire respondents as one of the better sources of their information.
The association of an older age group with rheumatoid disease may influence the desirability of accessing information by computer. Inoue et al. [13] found that what they termed ‘aged persons’ had a strong aversion to using computers to access educational material and that a third could not use computers at all. In an evaluation of the use of a computerized version of a self-assessment questionnaire, the Short Form 36, we found that once people (with an average age of about 50 yr) had overcome their initial anxiety about using computers they preferred to use this method in future as they felt it was often quicker and easier [A. S. Wilson, G. D. Kitas, D. M. Carruthers, C. Reay, S. P. Young, J. Skan, S. J. Harris, C. Gordon and P. A. Bacon, manuscript in preparation]. In this study, 70% of those users who answered the on-line questionnaire were over the age of 40 yr and 21% were over 60 yr. This suggests that, given the right encouragement and training, patients could use this facility to support their understanding of their condition.
In order to reach the widest audience, it is important to adopt an effective strategy of information delivery over the Internet. Our present evaluation indicates that targeting Microsoft products is very important as the majority of users who accessed our site were using a Microsoft Windows operating system, such as Windows 95 or 98 (82% of users), and versions 4 and 5 of the Internet Explorer web browser (71%). This reflects recently published information showing that Microsoft occupies 86% of the global browser and 94% of the operating system market [14]. It is also important to register sites with search engines, the core technology for navigating the Internet. We found that Excite (http://www.excite.co.uk) was the most effective search engine, which could be attributed to our ranking with them, ours being the first rheumatology site to be quoted. Unfortunately, the ranking of a site with a search engine reflects the number of hits to that site and does not necessarily reflect the quality of the information contained within it. The other way of navigating information on the Internet, by hyperlinks from sites with a similar content, seemed to be used less than direct referral by a search engine.
A review of the most common search phrases used to reach our site showed that ‘pleurisy’ was the most popular phrase, followed by ‘osteoarthritis’, ‘arthritis’ and ‘rheumatoid arthritis’. It is difficult to explain why ‘pleurisy’ is the most favoured search phrase, but it is associated with systemic lupus erythematosus (SLE/lupus), about which there is a large amount of information contained within our site. The search phrase ‘lupus’ is used very infrequently compared with ‘pleurisy’; taking into account the low number of SLE respondents answering the questionnaire, this may indicate that the phrase ‘pleurisy’ and SLE sufferers are not directly related. Similarly, ‘osteoarthritis’ is a more popular search phrase than ‘rheumatoid arthritis’, yet more questionnaire respondents were diagnosed with the latter condition. There is less information on osteoarthritis (OA) in our site than on RA, yet both groups equally reported our site to be extremely useful for them. However, the possibility remains that more RA sufferers answered the questionnaire yet more OA sufferers actually visited the site—this would not be quantifiable by either log-file analysis or the questionnaire. Relating search phrases to subgroups of users is very difficult, as they may not necessarily reflect one another. Our data indicate that an appropriate choice of keywords to describe a site (the search engines register these keywords), should be used in order to attract the relevant target audience.
Over 550 of the 770 respondents rated our site as a useful source of information and 167 indicated that it could prompt them to change their behaviour in some way, seek further information about their condition or allow them to engage in more effective discussions with their health-care practitioners. This suggests that patient education in rheumatic disease can result in positive changes in knowledge, behaviours, beliefs and attitudes that affect health status, quality of life and possibly health-care use [15]. We believe that it is possible to deliver information designed to educate people/patients about their disease over the Internet with the intent of helping them manage their condition more effectively. In this paper we have (i) tried to relate two different methods (with their distinct advantages and disadvantages) in order to create a review of the use of our site and the best current methods for delivering information, and (ii) evaluated user opinion of this resource. In future the focus should be upon quantifying whether the information provided can actually influence patients’ behaviour and improve self-management of their condition. The information we present may point to better ways of currently designing websites in order to maximize their use with the intent of improving patients’ understanding of their disease and promoting beneficial management of their condition.
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Acknowledgments |
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The authors wish to express their gratitude to the Arthritis Research Campaign (ARC), UK for allowing them to reproduce extracts of their educational material on our websites. ASW and PL are funded by ARC (UK) grants B0594 (Integrated Clinical Arthritis Centre) and B0645. PAB is an ARC (UK) Professor of Rheumatology.
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Notes |
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Correspondence to: A. S. Wilson.
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