Louise Theodosiou is a specialist registrar in child and adolescent psychiatry on the Manchester rotation (Gardener Unit, Prestwich Hospital, Prestwich, Manchester M25 3BL, UK. E-mail: ltheodosiou{at}doctors.org.uk). Her main clinical interests are forensic psychiatry and the development of transition services for adolescents. She is increasingly interested in how the general public uses the internet as a forum for support and communication on health issues. Jonathan Green is a senior lecturer in child and adolescent psychiatry at the University of Manchester and an honorary consultant for Central Manchester and Manchester Childrens Hospitals University NHS Trust. His main clinical and research interests are in the effectiveness and organisation of in-patient services, and social development and psychopathology, including pervasive developmental and attachment disorders.
|
|
|---|
Furthermore, the internet promises a means of obtaining up-to-date information often not otherwise available, both in developed and (perhaps particularly importantly) in developing countries. At the end of 2000, about 350 million adults were using the internet (Ipsos-Reid, 2001). Eaton (2002) cites figures from Datamonitor reporting that one third of Europeans and almost half of Americans use the internet for health information.
Since the early days of internet use, it has been noticeable that mainstream providers of health care information are often initially slow to develop sites, whereas independent organisations and individuals are quick to offer health care information and products of varying degrees of quality, honesty and safety. This situation is sometimes compounded by the fact that health care users may feel alienated by official sites, either because they are wary of the motives of mainstream medicine or because they are searching for information that will be easier to read. It is interesting to note that published criteria addressing the issue of quality do not always include readability, although more recent papers are now addressing this. For example, Croft & Peterson (2002) used the criterion of accessibility to evaluate the quality of asthma education on the internet, and included in this items such as readability, language and download time.
In addition, some individuals actively search for information about complementary medicine, either because of adverse experiences with mainstream medicine or in desperation for cure. This may be an alternative to discussing complementary medicine with health care practitioners, whom they suspect may disapprove. Such people can be very vulnerable to claims made on unscrupulous sites.
The unpredictable nature of gathering information on the internet is further complicated by the fact that different search engines produce very different results for the same search terms, and subtle variations in wording can produce dramatically different findings. It is therefore hard to predict what a user will find.
Additionally, the process by which sites are ranked within search results is a complex one, based on the ease with which the site can be categorised (a process that can be influenced by the search engine used), the sites popularity, the number of other sites that link to it and how many search engines it is listed with. It is easy to see that this process can be manipulated, and that the inherent quality of the site is not always reflected in its ranking or availability on searches. This information is summarised in Box 1
.
Box 1 Factors influencing lay peoples access to websites
|
|
|
|---|
The early research into computer networks was carried out by the US Ministry of Defense and made public in 1972. In 1989 Tim Berners-Lee began working on an easier way to retrieve research documentation. He developed a coding system known as hypertext mark-up language (HTML), which is now used by web-content creators to produce links to other sites. He also designed an addressing system that allocated a unique location to each web page, and created a set of rules that permitted documents to be linked together on computers across the internet. These rules he called the hypertext transfer protocol (HTTP). Finally, he created the first browser, which was called the World Wide Web. This allowed users anywhere in the world to view his work on their computer screen. It gave a new order to the internet and led to an explosion in its growth.
A theme that will be picked up later in this paper is the potential impact of the work by Berners-Lee and his colleagues at W3C (the World Wide Web Consortium) on the Semantic Web. The Semantic Web aims to increase the cohesiveness of the web by standardising the coding languages used. This would make computer languages easier for machines to understand, both because they would all use the same coding and because the coding itself would follow a standard structure (at present the coding of some websites cannot be understood by either humans or computers). This can be a problem, for example when a human is programming a search engine for specific results.
|
|
|---|
| Box 2 Is online information safe? The following are among the issues that raise concern:
|
The growing number of pages on the internet (a survey of web servers received responses from 35 686 907 sites in November 2002 (Netcraft, 2002) makes it very difficult to regulate. This problem is compounded by the fact that the sites available are forever changing. Attempts to trace non-health-related sites involved in illegal sales have proven to be difficult and time-consuming. The Guardian recently published an article (Clayton, 2002) about a company named Brand Intelligence, which is used by businesses to monitor the way in which their names are being used online. The article highlighted the fact that professional-looking websites offering online sales facilities can appear and disappear without a trace in a matter of hours.
|
|
|---|
Quality initiatives
In the absence of clear universal legislation, different quality initiatives have been developed to guide the user seeking online knowledge. As Risk & Dzenowagis (2001) explain all sets of criteria derive from very similar roots ... these roots are the principles of honesty, privacy, confidentiality, accuracy, currency, provenance, consent, disclosure and accountability.
Generally speaking, these initiatives fall into the following six categories (the web addresses of the organisations mentioned within these categories are given in Table 1
).
|
View this table: [in a new window] | Table 1 Available quality initiatives |
The eHealth Code of Ethics
This was produced by the Internet Healthcare Coalition, which began as a response to issues raised initially by the Food and Drug Administration in 1996. It is now a globally recognised body which has guidance on its websites for people seeking health care information on the internet. It is a not-for-profit body. American Medical Association Guidelines (Winker et al, 2000) are the principles governing the Associations websites, which other organisations can adopt or use as the basis for their own guidelines.
Trustmarks
Websites can display trustmarks to indicate that their sites meet acknowledged standards of quality and ethics. Among the bodies offering trustmark accreditation are the American Accreditation Healthcare Commission (URAC), Health Internet Ethics (Hi-Ethics) and the Health on the Net (HON) Foundation.
URAC
This is a not-for-profit organisation whose accreditation criteria are based on the principles summarised by Risk & Dzenowagis (2001). Websites applying for accreditation are reviewed first by a member of the URAC accreditation staff and then by its Accreditation Committee and Executive Committee. There is a fee (in 2002, roughly US $2000 to US $5000) for this process. Accredited sites that subsequently display non-compliance with the guidelines can have accreditation withdrawn.
Hi-Ethics
This not-for-profit organisation also bases its accreditation criteria on the principles summarised by Risk & Dzenowagis. Its accreditation is currently carried out by URAC. Sites that subsequently display non-compliance with the guidelines can have accreditation withdrawn.
HON
The Health on the Net Foundation was set up in 1995 after a conference on the internet. The HON Code was launched in 1996. Once again it is not-for-profit and its accreditation criteria are based on the principles summarised by Risk & Dzenowagis. The Foundation also has two medical search engines. The HON Code differs from the two accreditation systems mentioned above in that it is a self-certification system. Sites that conform to its eight basic ethical standards can choose to display its logo, which acts as an active link to the HON site to ensure authenticity. However, HON does review all sites that apply for membership and if sites do not conform, the link connecting their HON logo to the HON site can be broken. The fact that sites do not have to pay to use this certification system can be an advantage for smaller sites.
Dedicated medical search engines
Search engines can be programmed to look for high-quality information. One such engine for medical searches is Omni, which reviews information in health sites. People searching with this engine receive addresses of quality assured sites. Omni monitors sites and frequently searches the internet for new sites. Omni is a gateway within the Biome service, which provides equivalent services for other sciences. Although this portal is aimed at students, researchers, academics and practitioners, other people are free to use this service.
Explicit evaluation criteria
There are also evaluation tools that users can apply to a website, in order to draw their own conclusions about its status. These include Discern and the Mitretek evaluation tool.
Discern
This tool was initially developed to assess the quality of printed written information, but it is now available for internet sites as well. It has been devised by a panel of experts from a broad clinical and professional base. People take a copy of the tool to sites they wish to evaluate. This procedure can be time-consuming and is subjective.
Mitretek
The tool developed by a panel of experts at Mitretek also provides a system for assessing the quality of websites. People using the tool on a particular site complete a questionnaire and arrive at a quality score. This tool is no longer funded by Mitretek nor is it supported or maintained by any other organisation. Although it is not clear whether or not it is in use it can be viewed at the web address shown in Table 1
.
Certification and Rating of Trustworthy and Assessed Health Information on the Net
Known by the acronym MedCERTAIN, this is a project funded by the European Union as a part of the Action Plan on Promoting Safer Use of the Internet by Combating Illegal and Harmful Content on Global Networks.
A system is currently being developed that will provide both a quality seal and a search engine to search for sites that have a recognised quality rating. It makes use of file metadata the data about data contained in each file on a computer standard vocabulary about quality, and content filtering labels (Risk & Dzenowagis, 2001). It aims to establish software for systems of both self- and third-party rating that will identify and select high-quality information. The self-rating system is for those who set up websites and post documents, and the third-party system is for individuals who use or recommend that information. Thus, it can be seen to be working towards the same end as the Semantic Web mentioned above. Additionally, MedCERTAIN aims to actively encourage information providers to conform to guidelines on ethical content and take a part in consumer education.
.health: a new domain
In 2000, the World Health Organization (WHO) put forward the suggestion that a new domain, called .health, be set up which could be used by approved health sites (Illman, 2000). The Internet Corporation for Assigned Names and Numbers (ICANN) rejected this proposal, on the basis that it would be very difficult to police sites and also that it would give the WHO immense control over health information. ICANN reconsidered the proposal in 2002, but again rejected it. The WHO has now proposed that ICANN should set out a clear timetable for agreeing new domain names after rejecting a proposed health domain (Brown, 2002).
|
|
|---|
By 1997, a range of papers had been published. Gomez (1997) discussed the need to assess cancer information on the internet. Wootton (1997) looked at information on womens health and observed: Most arguments in favour of regulating and restricting the information that is accessible to patients underestimate the power of the new health care consumers and fail to distinguish between quality of information and quality of knowledge. This is an observation that articles still echo. Davison (1997) reviewed 167 websites giving dietary information and found that 76 (45%) of these provided information that was not consistent with one or more of the recommendations made in Canadian national guidelines on nutrition, and included information that was essentially advertising. Impicciatore et al(1997) found that only 4 out of 41 web pages offering parenting information adhered closely to the main recommendations of clinical guidelines for managing fever in children set out by El-Rahdi & Carroll (1994).
In 1998, Jadad & Gagliardi published the first systematic review of the instruments available for evaluating health information on the internet. They found 47 such rating instruments. Fourteen of these provided a description of the criteria used to produce the ratings, but only 5 of the 14 provided instructions for their use. None of these 5 had been validated. This called into question the reliability of the very sites supposedly providing information on reliability.
|
|
|---|
Emergence of quality review tools
Alternatives to regulation of the internet have also been put forward. Eysenbach (1998), for example, suggested that independent third parties should evaluate sites and that sites carry electronic labels locatable by search engines. This would allow users to specify clearly the information they want, and is one of the principles incorporated in the MedCERTAIN project.
By 1999 there were further proposals for methods of searching for sites with certain markers of quality (Price & Hersh, 1999), for helping patients to develop self-assessment methods for reviewing the information they find (Jones, 1999) and for the use of indirect quality indicators to help assess quality. Hernández-Borges et al(1999) used this method and concluded that some website characteristics such as the number of daily visits, their updating frequency and, overall, the number of websites linked to them, correlate with their evaluation by some of the largest rating systems on the internet. Finally, Kim et al(1999) reviewed the criteria being used to assess sites and concluded that authors agreed on many key criteria and that there was a need to reach a consensus on these findings and disseminate them in a form that the general public could understand.
The BMJ explored the issue of online health in a special edition in March 2002, reporting that a government-funded body in The Netherlands had launched its own trustmark (Sheldon, 2002) and that Gagliardi & Jadad (2002), in a follow up to their study of quality ratings (Jadad & Gagliardi, 1998) found that many incompletely developed rating instruments continue to appear on websites providing health information, even when the organisations that give rise to those instruments no longer exist.
Wilson (2002) reviewed the quality of available rating scales and concluded that quality remained a subjective assessment and that applying tools to a website is a time-consuming exercise that users might be reluctant to undertake. Wilsons article argued against developing yet more tools, suggesting instead that users would in time develop the skills to assess the internet effectively, just as they acquire skills to assess written information. As mentioned above, the WHO once more argued (unsuccessfully) for the creation of a domain name, .health, to help guide users to reliable information (Brown, 2002).
Two other studies in 2002, by Eysenbach et al and Craigie et al, respectively concluded that the subjective method of reviewing specific information with unvalidated tools is a potential source of misinformation, and that a panel of five experts who reviewed online information had a low level of agreement. This indicated the clear need for interrater reliability in research assessing the accuracy and quality of information on the internet.
Is trustmarking acceptable and possible?
It might be argued that the very people who are most likely to seek information from sites that do not seem alienatingly official would be put off by the quality measures suggested above. Some sites are created by individuals who are independent of organisations that might oversee the safety and quality of their contents. Such sites might be particularly likely to contain dangerous or misleading health care claims, but unless they have obtained an official quality seal they have been largely unexplored by medical researchers. These independent sites could add another layer to the debate. There are also many sites run by organisations such as charities, addressing specific health issues (e.g. drug or alcohol use). Papers have been published that make recommendations about sites, but these too are largely unexplored and unconsidered.
|
|
|---|
As can be seen, each passing year brings new contributions to the internet debate and further dimensions to be debated. In 2000 Childress explored the ethical responsibilities of provision of online psychotherapy. He pointed out that if there is a demand for the service then people will try to fill it and that it is important they do so ethically. He also explored the important themes of minimising misunderstanding in text-based therapy and maximising confidentiality. It is interesting to note that in 2001, Philip Hodson issued a press release on behalf of the British Association for Counselling and Psychotherapy which offered guidelines about using online therapists (Hodson, 2001). Eysenbach & Till (2001) explored the ethical issues involved in doing qualitative research on the internet, raising the important point that the privacy of online communities might be violated, as might the confidentiality of users of the site.
The internet contains many examples of online communities; these include mailing lists, bulletin boards and online newsgroups. These forums are used for discussion, information exchange, socialising and giving and receiving support, and they can cover very sensitive issues (Sixsmith & Murray, 2001). The fact that these sites are freely available in the public domain has led to debate about studying them. Sixsmith & Murray outline the ethical considerations of viewing what online communities have written, pointing out that they can be a way of hearing the voices of people not usually represented in research, and also that such study raises issues of consent. It has been argued that researchers are only participating in the electronic equivalent of hanging-out on street corners ... where they would never think of wearing large signs identifying themselves as "Researcher" (Garton, 1997). However, Garton too spoke of the importance of respecting the privacy of the participants, to ensure that they do not lose trust in the very forums that may be providing them with important support.
It is interesting to note that while the psychology community has considered internet ethics almost exclusively in terms of the moral considerations involved in studying online activities, medicine has tended much more to consider the ethical concerns involved in the provision and regulation of online health care.
|
|
|---|
The fact that patients are increasingly bringing internet information into the consulting room raises many interesting issues. Some of the knowledge they find may be detrimental to the consultation (Box 3)
, but the very fact that patients are using the internet may drive doctors to do the same, thus enhancing practice and perhaps enabling doctors to become involved in policing some of the more dangerous sites.
| Box 3 The influence of the internet in the consulting room Patients easy access to the internet can have repercussions in the consulting room. For example:
|
In the absence of clear guidance about the role of medicine in relation to the internet, several themes emerge. First, there is a need for more widespread debate through the medical Royal Colleges and the British Medical Association. Second, the undergraduate syllabus should include more teaching on online information available to patients. Finally, and perhaps most importantly, doctors must be aware of the online patient information in their specialist area. This task could be undertaken jointly by a group of clinicians and in this way could once again involve the medical Royal Colleges.
|
|
|---|
| Box 4 Guidelines for doctors assessing a website for use by patients The following guidelines are based on the American Medical Association Guidelines (see Table 1 Content Check the sites ownership, quality of editorial content, date of posting and updating, sources of editorial content Advertising and sponsorship Advertising should not be on the same page as information about the same topic; it should be obvious when links take users to an advertising site; sponsorship should be clearly displayed on the home page Information Is this factually correct? Does it meet with available guidelines (e.g. NICE)? Do you think your patients would be able to understand it?
|
Principles for content cover, among other things, definition of website content, site ownership, site viewing, funding and sponsorship, quality of editorial content, review, date of posting, revising and updating, sources of editorial content, linking, intersite navigation, downloading of files and navigation of content.
Principles for advertising and sponsorship include the prohibition of advertising on the same page as editorial comment on the same topic; the option to skip over an advertisement; the need for advertising to be readily distinguishable from editorial content; and the need for links to advertising sites to be clearly marked and to show sponsorship details, both on the home page and on the pages on which the links appear: it should be very obvious when a user will be transferred to such an advertising site.
In addition to these principles, doctors should apply their medical knowledge to the quality of the information provided, i.e. its factual correctness and whether or not it meets with available guidelines such as those published by the National Institute for Clinical Excellence (NICE). There are no universally recognised guidelines covering the accessibility of the information and the best tool is probably an awareness of the issue itself.
There are no clear universal regulations governing health care information, and several different approaches are available:
There are moves to provide more effective measures, but none is yet available.
At present, many of the articles about the internet are read in paper, not electronic, form. Perhaps there is a case to be made for offline education of patients and clinicians about online health care information available for the general public. Practical ways of tackling this include leaflets and posters in general practices or advertising in the national media. Such public education will need to take into account the possibility that anxiety about the internet may partly be a generational issue. For children who grow up e-mailing their favourite Saturday morning TV presenter, some of the skills necessary to discern good or bad online information will spontaneously become increasingly well developed just as previous generations learned which teen magazines to trust.
|
|
|---|
It may well be that the current success of the internet is in no small part due to the fact that using it enables people to enhance their sense of autonomy. One of the key roles and privileges of the medical professional in the past was to embody and wholly regulate a base of health-related knowledge. Those days have gone (and, of course, were not uncontested even then). We live in a society of increasingly widely disseminated knowledge and plural sources of authority. Doctors will continue to have a key place in the health knowledge arena, but will need increasingly to share the ring within wider knowledge debates. The public wishes to use its own decision-making abilities and, when worried, is highly motivated to search the field.
It is paradoxical to think that, just as the wider health debate is spiralling into plurality in this way, our own professional knowledge base is becoming ever more tightly regulated, evidence-based and convergent. Perhaps it is just this paradox that contains the seeds of the future and our own role in it. As we tend less and less to ensure the reliability of information by putting trust in an individual who embodies respect, we find that we need increasingly rigorous and transparent external procedures for knowledge validation. In so far as it is successful, this effort to construct and maintain an objective evidence base is bound in time to become increasingly the gold standard for the wider community also and the professionals who have led the way become valued again for their personal judgement as well as their rigorous knowledge management. In the meantime, we cannot hope to regulate the wider arena but we must engage with it.
|
|
|---|
|
View this table: [in a new window] | MCQ answers |
|
|
|---|
This article has been cited by other articles:
![]() |
J. V. Marriott, P. Stec, T. El-Toukhy, Y. Khalaf, P. Braude, and A. Coomarasamy Infertility information on the World Wide Web: a cross-sectional survey of quality of infertility information on the internet in the UK Hum. Reprod., July 1, 2008; 23(7): 1520 - 1525. [Abstract] [Full Text] [PDF] |
||||
![]() |
K. Luevorasirikul, N. J. Gray, and C. W. Anderson Developing a consumer evaluation tool of weight control strategy advertisements on the Internet Health Educ. Res., June 1, 2008; 23(3): 567 - 575. [Abstract] [Full Text] [PDF] |
||||
![]() |
C. A Rennie, S. Hannan, N. Maycock, and C. Kang Age-related macular degeneration: what do patients find on the internet? J R Soc Med, October 1, 2007; 100(10): 473 - 477. [Abstract] [Full Text] [PDF] |
||||
![]() |
J. Green The evolving randomised controlled trial in mental health: studying complexity and treatment process Adv. Psychiatr. Treat., July 1, 2006; 12(4): 268 - 279. [Abstract] [Full Text] [PDF] |
||||
![]() |
S. Ercan, A. Kevern, and L. Kroll Evaluation of a mental health website for teenagers Psychiatr. Bull., May 1, 2006; 30(5): 175 - 178. [Abstract] [Full Text] [PDF] |
||||
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||