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Rapid Responses: Rapid Responses published:
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Supply-side ethics
- Ahmad Risk (8 October 2000)
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Education is key to compliance
- John Mack (10 October 2000)
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Quality of Websites: Who is qualified to determine it?
- Kirsti A Dyer (17 October 2000)
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Kitemarking
- Mat Jordan (21 October 2000)
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Assessing e-health information - existing healthcare providers have a role
- Ray Armstrong (9 November 2000)
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The instructions must be on the web. point to them not paper
- Adrian midgley (19 November 2000)
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Labeling websites is feasible and desirable
- Gunther Eysenbach (1 December 2000)
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Consumers must be the final judge
- Gayle L Wolfe (12 March 2001)
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Ahmad Risk, Editor Health Informatics Europe Brighton England
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I agree, Tony. That is why the 'eHealth Code of Ethics' atrives to provide an aspirational framework for ethical behaviour for all health websites and eHealth enterprise if and when that comes. The Code emphasises that quality should originate from within the organisation. Raising awareness and educational programmes for those who provide health information, products or services on the Internet remain the crucial elements of implementation in a real world. Furthermore, we also believe that responsible self-regulation can only succeed if it is in partnership with regulators protecting the public from harm. The Code becomes the backdrop to, and the informant of legislation. Incidentally, the public did not punish drkoop.com, the market did. The public continues to flock by the millions to the site despite unprecedented adverse publicity. I have no explanation for that phenomenon other than the general trend of ever declining passion for taste and quality. Ahmad Risk
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John Mack, President Internet Healthcare Coalition
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The Internet Healthcare Coalition is one of the organizations responsible for developing an ehealth code of ethics (see http://www.ihealthcoalition.org/ethics/ethics.html). We have also recently brought together many of the other "code developers" at our recent conference in Las Vegas at which 3 of these groups -- Internet Healthcare Coalition, Hi-Ethics, and Health On the Net Foundation -- agreed to the following: "We share the same purpose - to earn the trust of the eHealth consumer. "The three codes were created to address different needs but their underlying principles are compatible. "Our respective efforts, once fully implemented, will create a comprehensive system of codes, compliance and verification that will help to deliver a trustworthy and responsible health Internet. "As the first step, we will create a coordinating committee to establish the common glossary of definitions and terms to be used in our verification and compliance efforts. "We will work to improve and evolve our individual codes and compliance efforts in a coordinated way and will cooperate with other international efforts." ----------------AGREED TO BY-------------------- eHealth Ethics Initiative of the Internet Healthcare Coalition
Health On the Net Foundation (HON)
Hi-Ethics (Health Internet Ethics)
---------------------------------- The AMA was also present and will bring this to their governing board for a vote. I believe that a common terminology is an important first step in moving toward implementation. Without it, the job of educating the public, which is the Coalition's main concern, will be much more difficult. Speaking of the public, our recent survey conducted by Harris Interactive, shows some interesting differences between the general public and health web site developers when it comes to quality information on the Net and who should be the judge. The press release highlighting some of these results is provided below, but I was interested to learn that nearly one-third of the public believe that they should be the final judges of what is good quality and what is not. The survey showed, however, that the public does not understand how to apply the guidelines we have developed to empower them as judges. Any device or plan for health web sites to comply with codes must include education of the public as a necessary part. A common terminology shared by different codes would help; having a single code may also help, but it may be more important to have consumer-friendly guidelines such as the Coalition's Tips for Consumers (see http://www.ihealthcoalition.org/content/tips.html). In addition to education of the general public, web site developers must also be educated as Dr. Risk points out and which is revealed by our recent survey as well. Therefore, the Internet Healthcare Coalition is embarking upon an ethics education program for key executives, managers, and employees of health web sites. We hope to "certify people, not web sites" so that these trained employees will bring their good training to their new jobs -- employees do move around a lot these days! We call upon key orgainzations to help us: patient advocacy organizations such as the National Mental Health Assn in the US, which can help us reach consumers; and organizations like pharmaceutical companies, which can afford to subsidize education of employees and principals at small, non-profit organizations. It takes a community of interest -- a coalition -- to make any implentation and compliance plan work. Each of us who create health resources on the Internet must be part of that community and practice "ethical due diligence" when selecting their partners. If nothing else, this makes good business sense. John Mack, president
--------- NEW SURVEY SHOWS DISPARITY BETWEEN WEB DEVELOPERS AND CONSUMERS OVER HEALTH INTERNET Consumers much less confident than developers about quality and ethics of Internet healthcare information Las Vegas, NV – October 4, 2000 – Despite the best efforts of the health Internet community to stay abreast of the industry’s codes of ethics and follow those standards, these messages have not been reaching the general consumer, according to a survey commissioned by the Internet Healthcare Coalition and the National Mental Health Association. Conducted by Harris Interactive Inc., the results of the survey, “Ethics and the Internet – Consumers vs. Webmasters” was released today at the Coalition’s third annual conference, “Quality Health Information on the ‘Net 2000.” “The survey clearly indicates that education is and always has been the key to fostering a safe and comfortable consumer experience on the health Internet,” said John Mack, president of the Internet Healthcare Coalition. “Consumers want to be the final judge in distinguishing good sites from bad sites but still lack the tools to do so. The Coalition provides consumers with the necessary tools to judge and evaluate Internet healthcare sites.” “We want to work with the Internet Healthcare Coalition to guarantee consumers the most reliable Internet information to make the most informed decisions. The Ethics and the Internet survey and the Quality Healthcare Information on the Net 2000 conference will form the foundation for the NMHA’s Mental Health and the Internet conference held in Washington D.C. on February 15th, co-sponsored by the Internet Healthcare Coalition, ” said Michael Faenza, president of the National Mental Health Association. The key survey findings suggest that there is an apparent “digital divide” between the online public’s concerns and perceptions as they relate to the health Internet and those of the Web developers responsible for the construction of these sites. Although nearly one-fifth of the online public has registered with a health-related Web site and provided personal information, the study shows that most of these adults are not aware of the information these sites know about them and have not been informed as to how they can update the information they provided to the sites. Additionally, they are unaware that these sites are tracking their movements. Nearly half of all adults who registered with a health-related Web site did not look for privacy and confidentiality statements on the sites. Consumers look for information that is presented in terms that a layperson can understand. These measures of quality are less important to Web site developers, who are more likely than the online public to focus on professional standards. The public believes such standards are important, but they often cannot tell if they are being met. The majority of consumers feel that it is difficult to: distinguish between commercial and independent Web sites, identify the source of online information, or determine whether or not the information has been reviewed and approved by experts. More than eight in 10 consumers feel that it is difficult to identify the sponsors or funders of specific sites. The public’s apparent lack of discrimination may be a reflection of their lack of confidence in their own ability to evaluate quality or understand how quality is assured. Substantial percentages rely on their doctors to validate information, or they use multiple online searches as a means of validating information. Web site developers are unanimous in their view that quality standards are important, but that they are not, however, always implemented. One in three Web site developers indicate that their sites do not have set standards that advertisers and sponsors must follow in order to place information online, and one in five identify some, but not all other funding partners on their sites. Although Web site developers are generally concerned about the ability of health-related Web sites to maintain users’ confidentiality, they are much less critical of their own sites. The majority are confident that their sites are meeting consumers’ needs for confidentiality and that their organizations are aware of and adhere to ethical standards. The recently completed survey was conducted online with a cross- section of 1,049 adult members and willing survey respondents from the Harris Poll Online panel. In addition, Harris Interactive surveyed 165 members of the Internet Healthcare Coalition, which included 101 developers or managers of healthcare related Web sites. About the Internet Healthcare Coalition The Coalition is an international, non-partisan, non-profit organization dedicated to identifying and promoting quality healthcare resources on the Internet. Founded in 1997 and based in Washington, D.C., the Coalition’s membership represents every sector of the Internet health space, including consumers, commercial developers of health information, medical libraries, special-interest societies, and manufacturers of regulated drugs and medical devices. The goal of the Coalition is to educate healthcare consumers and professionals about the evolving issues relating to the quality of Internet health resources and information. In October 1999, responding to calls from within the Internet health community, the Coalition launched its ongoing “eHealth Ethics Initiative” to provide a forum for the development of a universal set of ethical principles for health-related Web sites. More information regarding the Internet Healthcare Coalition can be found on the Web at http://www.ihealthcoalition.org |
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Kirsti A Dyer, Physician, Self-employed. Graduate Student OHSU Medical Informatics Program Part-time Locum Tenems
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This article by Mr. Delamothe [1] resonated with several of the issues I have been grappling with regarding quality medical information on the Internet and reinforced some additional important questions for me. This summer I extensively reviewed the state of medical ethics on the Internet for a graduate course in medical informatics with Oregon Health Science University. [2] During this review of the current state of the Internet, I discovered other key questions that will need to be addressed regarding the quality of websites and the organizations trying to establish the standards: · Which seal/trustmark/kitemark is best?My interest in determining quality information on the Medical Internet is a professional/educational one, not a commercial one. This interest originates from a long-standing involvement in medical ethics and from providing quality medical information for a not-for-profit website devoted to the issues of grief and loss. [3] My perspective is that of a practicing physician who is interested in the use of the Internet as an adjunctive modality for patient and physician web-education, [4,5,6,7,8,9], a domain designer of several (non-money-generating) medical websites and a graduate student in medical informatics. In this article Mr. Delamothe raises the question: "How much do we know about consumers’ use of kitemarks and seals of approval on the internet?" So far, we know a bit. In January 2000 the California HealthCare Foundation along with the Internet Healthcare Coalition released the results of their "Ethics Survey of Consumer Attitudes about Health Web Sites." In this survey of online adults it was determined that in more than 50% of respondents, seals of approval from Internet trade groups such as HON and TRUSTe had no impact on their willingness to submit health information online.[10] If this proves to be the typical response for online users, a lot of energy may be spent developing trustmarks and standards for consumers to use that ultimately may not improve their trust in a site. With over 60 different instruments for rating websites found by Jadad and Gagliardi, it is no wonder that the idea of providing Internet users with one quality rating system and have the system guaranteed by a trusted third party may prove to be difficult. [1] As someone not involved in the inner circles of these organizations, it appears that the various groups— AMA, Hi-ethics, HON, IHC, MedCERTAIN, URAC—have spent a great deal of time, resources, and money "reinventing the same wheel." Much of the impetus for developing and determining the quality of information reflects the competition to become "the" definitive authority—the one that will set the standards for reviewing and judging quality in medical websites that others will need to follow. In this past year there has been a flurry of activity to establish guidelines for determining quality of information on the Internet. In March the AMA published its own guidelines for medical and health websites in the JAMA March 22/29, 2000 issue. [11] In May the Internet Healthcare Coalition (IHC) released the Internet Healthcare Coalition’s eHealth Ethics Initiative International Code of Ethics. [12] In October they held their conference in Las Vegas, where representatives from the eHealth Ethics Initiative of the Internet Healthcare Coalition, Heath on the Net Foundation (HON) and Hi-Ethics (Health Internet Ethics) agreed to "create a coordinating committee to establish the common glossary of definitions and terms" yet still will be working "to improve and evolve our individual codes and compliance efforts in a coordinated way and will cooperate with other international efforts." [13] In September the MedCERTAIN consortium held a Consensus Workshop to look at quality criteria, rating and evaluating for health information on the web and to establish a set of consensus quality criteria for health related websites. [14] To date the MedCERTAIN consortium has released their Collaboration statement of purpose [15] and the Consensus Recommendations on Trustmarks [16] Also in September URAC (American Accreditation HealthCare Commission) appointed the members of its Health Web Site Advisory Committee, a committee that will develop an accreditation program for health care web sites. [17] Unfortunately, it does not appear that the various interested organizations have committed to working under one organization toward one common set of standards for determining quality of websites and establishing medical Internet ethical principles. Rather than the current chaos of a multitude of redundant, overlapping and competing organizations vying to become "the" standard setter, the ideal situation would involve these various organizations putting aside ego and potential monetary interests to work together towards adopting or refining one common code. One can hope that the agreement of several organizations at the October IHC Meeting and the Consensus reached at the MedCERTAIN conference is indicative of movement in the right direction. I am concern also that there is little input sought from those who may know the patients the best—the practicing physicians. There are many physicians who have websites for their practices, or who have created web resources for their patients and the Internet community, who could serve as valuable resources. While not one of the mega-online corporations that are involved with several of these organizations, physicians creating on-line content for their patients can contribute invaluable information about striving for excellence in on-line content, using the Internet for web-education and the basic understanding about the patient-physician relationship. I agree with Mr. Delamothe’s comments about the ability of the public in general to cope with the more familiar sources of information forms—newspapers, magazines, books and radio, and televisions programs—without kitemarks. However, we should be concerned that the new media, the Internet, differs from the older in one major aspect; it is much easier for anyone to establish a professional-looking website and gain a forum for their service/product/cause. In a medium where appearances are what counts, online users must be wary, because appearances can be deceiving. Physicians are being faced with an ethical dilemma in this era of the new media bonanza, where medicine is merging with the Internet. Much as with managed care, in this new medium the emphasis is not on patients, but on making money. Decisions are frequently made based on what is good for the business, not the patient. As physicians, our first obligation is to serve the good of those persons who seek our help and trust us to provide it. This is obligation should be extended to face-to-face and on-line encounters. According to the AMA’s Patient-Physician Covenant: "Physicians, as physicians, are not, and must never be, commercial entrepreneurs, gateclosers, or agents of fiscal policy that tuns counter to our trust." [18]In the last few years, the potential monetary gains for physicians to be made from the dot.com era has been enormous. As part of our professionals code of ethics, physicians have an obligation not to exploit the vulnerability of our patients, or allow anyone else to do so working under our name; this same obligation should be extended to online Internet users. Yet this obligation is in direct conflict with the business model. As physicians, it is our duty to define what is considered to e competent medical care on the Internet and to educate those non-medical professions involved in providing online medical services of the obligation not to exploit Internet users. Obviously, my perspective is different than that of Mr. Mack’s response: "Each of us who create health resources on the Internet must be part of that community and practice ‘ethical due diligence’ when selecting their partners…this makes good business sense." [13] My concern is for determining what is good for the patients and those seeking medical information on the Internet. It is imperative that medical website designers, writers, backers, consultants and e-health marketers understand the basic obligation of the physician to his/her patient and abide by the same fundamental obligation when this relationship is transferred to the Internet. Maintaining a strong internal code of ethics by which to practice has always been a core component of medicine. This code of ethics will ultimately help to determine guidelines for establishing quality information on the Internet. It is the personal responsibility of each person or each organization seeking to practice online or planning on publishing medical information online to remember that the practice of medicine involves a commitment to service, not to economic interests and that patients—on or off line—ultimately must come first. [2] Kirsti A. Dyer, MD, MS, FAAETS
References 1. Delamothe T. Quality of websites: kitemarking the west wind. BMJ 2000;321:843-844. http://bmj.com/cgi/content/full/321/7265/843
844 (accessed October 11, 2000).
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Mat Jordan, Content Manager, NHS Direct Online Winchester, Hants
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Thank your for your perceptive and timely comments on the issues involved in kitemarking health information on the web. From my experience with NHS Direct Online over the last year I know this is a topic of great interest to health care professionals, patient groups and commercial companies. It's also the cause of not inconsiderable controversy. From our point of view, policy is the driving force behind the kitemarking agenda. Information for Health promised access to 'accredited' information both for professionals (via NeLH) and patients (through NHS Direct and the Patient's Floor of NeLH). This has been extended in subsequent policies and rears its head again in the NHS Plan which talks about the accreditation of content for an NHS-funded digital TV channel. Unfortunately, worthy statements couched in vague terms in policy documents display an ignorance of the complexities involved in carrying out retrospective evaluation of health information. Not only are the issues around judging the quality of information complex, there are also numerous vested interests such as those attempting to establish their own ethical codes and quality rating schemes. NHS Direct Online is constantly fielding approaches from organisations and individuals trying to get us to adopt their schemes. Whilst some of these have laudable intentions and may have some intrinsic value, few if any have been subject to systematic development or evaluation. There is some agreement on broad quality criteria as you say (accuracy, comprehensiveness, balance etc) but once we get down to the nitty-gritty of codifying these criteria and trying to establish objective measurements, the mammoth complexities of the task emerge and consensus often breaks down. NHS Direct Online uses the DISCERN instrument to rate written patient information. Although not designed with web-based information in mind, DISCERN has been subject to tests of its reliability and validity[1]. Even so, it would be foolish to pretend that DISCERN doesn't have limitations and that it could not be used as the basis of a more comprehensive kitemarking scheme without substantial additional work. Thinking about implementing kitemarking systems also means we have to deal with some economic realities. Is kitemarking cost-effective? I estimate that establishing and running a comprehensive kitemarking system for patient information in the UK would involve tens if not hundreds of people including subject experts, information professionals, designers etc. It would probably cost many millions of pounds and involve untold bureaucracy. Is this a cost-effective and appropriate way to spend British tax-payers money? What measurable benefits might it have for patient care? Whilst I don't believe I'm qualified to speculate on the answers to these questions, I do believe that NHS Direct Online has a legitimate role to play in helping citizens to access some of the better health information resources around and providing them with up to date information about the NHS. But ultimately, we are just as likely to be judged on the reputation we establish and the integrity we display as an organisation than by the logos, kitemarks and attendant paraphernalia that we decorate our site with. 1. D Charnock, S Shepperd, G Needham, and R Gann DISCERN: an instrument for judging the quality of written consumer health information on treatment choices J Epidemiol Community Health 1999 53: 105 -111. |
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Ray Armstrong, Consultant Rheumatologist Southampton General Hospital, UK
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As indicated in the BMJ leader, we do not expect regulatory authorities to look at every published book and magazine in order to tell us whether they are good or bad. Ultimately, the marketplace decides whether a publication lives or dies and in the long run, the same process will probably determine the fate of many medically orientated websites. We should indeed ask whether the task of attempting to rate all e-Health websites is worth the effort. What percentage is harmful? How much harm do they do? Voluntary adherence to a code of practice that is widely supported by the e-Health fraternity seems the best that we are likely to achieve ( http://www.ihealthcoalition.org). The WHO's wish to establish and control a .health top-level domain ( http://www.icann.org) may seem admirable but in reality this seems over ambitious. Those who wish to publish on the Web will do so in any case and the prospect of the WHO being able to police this area of Web activity effectively with what are presumably limited resources seems improbable. This is setting aside considerations as to whether establishing control over content is a good idea in any case. This is questionable, whichever organisation is responsible for it. Some of the discussion on this topic gives the impression that the evolution of e-Health activity has matured when in reality this is an ongoing process and much change is likely yet to occur. Most of the public, at least in the UK, still rely upon personal contact with their primary care physician or specialist as the conduit for information about their health problems. This relationship relies heavily upon trust which is the ingredient that ultimately will determine survival or otherwise of e-Health activities. Surely it would be far better for the medical and allied health professions to build upon their existing relationship with the public/their consumers and exert some control over their part of cyberspace. The public presumably spend so much time seeking health- related information on the Web because they perceive a lack of provision of necessary information by their existing health providers. Perhaps doctors and medical societies would do well to exploit the opportunities that the Web provides to communicate with their patients and the public. Although the public will always wish to seek additional information from whichever source will provide it, the existence of a trustworthy familiar presence on the Web will counterbalance the more dubious material and the Web-savvy physician will be in a better position to guide the patient through the maze of information. Dr. Ray Armstrong
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Adrian midgley, GP, IT sabbatical Exeter
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A reasonable posting, but giving a reference to the DISCERN instrument in a paper journal is no longer acceptable when one is discussing Web material. DISCERN is at http://www.discern.org.uk/discern__instrument.htm and above and around this there is some discussion of the instrument. Kitemarking is not as good an approach as is the Web of Reputation, and the use of separate servers handling reputation managment. Does the NHS have the ... moral courage and forcefulness of expression ... to put up a server providing to anyone who asks an official NHS opinion on the validity or quality of any site they care to enquire about? Kitemarking is a safer-feeling bureacratic solution, but the safety provided is to managerial necks, not to patients, and comes at the cost of openness, transparency and speed of reaction. | |||
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Gunther Eysenbach, Senior Researcher Dept. of Clinical Social Medicine, Uni Heidelberg
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As the initiator and co-odinator of an EU project, which could be misunderstood as "kitemarking" project, I feel obliged to reply and to clarify what we want to achieve and how and why our approach differs from what is being described by Delamothe. First some general remarks: It is interesting to note that every argument brought forward by Delamothe against the feasibility of selecting websites for recommendation to consumers can in principle be generalized to the problem of selecting, evaluating and endorsing any kind of printed or electronic information. One could for example use very similar points of view to argue against the feasibility to select medical manuscripts for publication in the BMJ – a process that has similar problems of low inter-observer reliability (and none of the medical journals I am aware of have ever published figures regarding reliability and validity of their selection process or instruments used by reviewers). Despite these methodological difficulties, users (producers of the information as well as readers) appreciate the input of external evaluators and the input of an editorial board to improve the manuscripts. The scientific community has accepted peer-reviewed journals as a useful mechanism for users to access filtered information. And it is interesting to note that also in the scholarly publishing world, the processes of evaluating the quality (peer-reviewing) and making the document physically available can be reversed in a sense that papers may also be published first on pre-print servers and later be tagged with meta-information and post-publication reviews 1 In a way, kitemarking, trustmarking and "gateway-building" on the web is a meta-publishing process, having a similar role as medical journals in selecting information which can be recommended to users. Such "selecting and publishing" processes will inherently always have a limited degree of "reliability". Traditionally, publishers have the task to take raw information, to establish quality control mechanisms and to establish a reputation for the reliability of their information. Gateways and trustmark concepts are meta-publishers who - without putting any ink to paper or producing another media - may get back to the fundamental truth of being a publisher: To be a credible source and to establish trust – in the future, "pure metainformation-publishers would evaluate and describe information produced by others on the Internet." 2 The argument that rating, evaluating, kitemarking websites is impossible as the content of websites changes too frequently is not a valid one, if the recommendation refers to the information system and information provider, but not the information itself. Does it make sense to argue, that it is impossible to recommend the BMJ or serials such as Clinical Evidence to colleagues, because the actual content changes frequently? The recommendation of such sources is based on knowing the process (and perhaps people) behind the information production and evaluating some samples of the product. If an evaluator has assessed both, he may decide to trust the information source, and may also communicate his opinion to others. Thus, the function of a trustmark would be "not to guarantee for information correctness or usefulness, but to enhance trust into the information provider" [Heidelberg Consensus Recommendations on Trustmarks] 3. Any trustmark approach can only symbolize that the information producer has taken a number of steps to increase transparency and ensure quality, but cannot and does not want to guarantee the "accuracy" of information. Now: on what criteria can we select sites and information providers as being trustworthy? How this can be implemented can be best demonstrated by explaining the EU project MedCERTAIN (MedPICS Certification and Rating of Trustworthy and Assessed Health Information on the Net), which uses a "third-generation trustmark" concept. This must be discriminated from traditional "kitemarks" such as colourful logos awarded by the information provider himself in an act of non-monitored self-certification. The MedCERTAIN labeling concept – a combination of self-labeling and third-party control - can be best explained by drawing an analogy to food labels. Replace for a moment the question of "which high-quality websites can we recommend to users?" with the question of "what high-quality food can we recommend to consumers?". Both questions seem to be unanswerable at first, as both on a large part depend on the needs of the respective individual . It becomes obvious that we may not simply put labels on foodstuff saying that for example this is "high-quality, recommended food". What is needed are elements of consumer education, self-labeling and external quality control. First, consumers have to be educated, to learn about healthy components of a balanced nutrition. Different consumers may be interested in different things, for example some may want to lose weight and may be taught that they should especially look for low fat products. Other may suffer from hypertension and it may be stressed to them that they should avoid food rich in sodium. Secondly, producers of food have to display ingredients of their foods on standardized labels, telling consumers for example the amount of fat and sodium contained in the products. Third, these labels and health claims of food providers have to a certain degree to be evaluated and compliance be enforced. The US 1990 Nutrition Labeling and Education Act (NLEA) for example regulates clearly how such nutrition labels should look like, when language such as "fat-free" may be used, which health claims may be used and how they have to be worded (http://vm.cfsan.fda.gov/label.html). Only together, these measures empower and encourage consumers to make informed choices. The MedCERTAIN trustmark is hoped to play a similar role on the World-Wide-Web. The concept is also based on the pillars of consumer education, encouragement of self-labeling and third-party evaluation. 4; 5. First, we have to educate consumers, what they should look for. We may for example teach them about privacy issues or we teach them about best practices in e-commerce, which internal quality management mechanisms in the production of information one may expect, and so on. The HON, AMA, IHC and Hi-Ethics group have all started to produce documents that may be used for these purposes, though their unclear language and lack of consensus has recently been critisized.6 Secondly, information providers should display clear labels containing all relevant information to consumers which allow them to assess the quality of an information provider. The first step in the MedCERTAIN trustmark project is therefore to let the information provider answer a questionnaire requiring to disclose certain information, such as who is behind the information service, who are significant sponsors, what are internal quality processes, who is the target audience, what is there aim of the website, and so on. This meta-information will be presented to the consumer in a standardised and accessible format once he clicks on the MedCERTAIN trustmark. In analogue to nutrition labels consumers may use the electronic MedCERTAIN label to select information that is relevant and appropriate for the individual needs and preferences. Moreover, MedCERTAIN will translate meta-information into computer-readable metadata, so that users may more specifically retrieve sites meeting their own needs or to get warnings if a site does not comply to individual preferences. This is the concept of "downstream-filtering" 7. On this level (MedCERTAIN level 1 trustmark), trust develops through self-commitment to web ethics and active disclosure in a standardized form and terminology. MedCERTAIN provides a stimulus and a technical framework for implementing web ethics, by providing a common access structure and terminology for disclosure information. Trust will be built up by the supplier of the information, as he tells users his processes on quality management, the qualification and training of staff, etc. However, as with food labels, a certain degree of external control, monitoring and evaluation is necessary, otherwise everybody could abuse these labels for marketing purposes. It is a familiar phenomenon that many webmasters are abusing meta-data to increase traffic to their sites by using deceptive meta-information (e.g. by using the keyword "sex" as description for their websites). Purely self-regulative initiatives such as HONCode are also sometimes abused as marketing instruments by webmasters, who may display the HON logo like an award, implying a degree of external evaluation that is not present. Pure self-certification systems may lead to more harm than good. Therefore, MedCERTAIN will, as much as possible, make sure that the meta-information provided by the information provider is correct, adequate and complete, and that formal ethical requirements of the site are complied with (level 2 evaluation). Finally, experts will look at the actual product, i.e. evaluate the content of information sources (in what we call a level 3 evaluation), much as a gourmet tester may taste and review food for a consumer magazines. Delamothe is right in saying that these aspects of quality are difficult or impossible to be rated in a "reliable" and objective fashion. In these cases it is more important for the consumer to be able to tell which organisation or individual experts says what about a given resource. When the user clicks on a MedCERTAIN level 3 trustmark, he will therefore be able to access the meta-information on which organisation says what about a given site. While this is difficult to achieve in the real world (if I buy a book it takes considerable efforts to find out which reviewer says what or which organisations recommend it), this is possible on the world-wide-web, if people who evaluate other resources use a common vocabulary (e.g expressed in XML). This vocabulary is the MedPICS vocabulary being developed as one deliverable of the MedCERTAIN trustmark. The idea is to build a "web of trust". The existence of the Web has led to a information overload for consumers which has led several authors arguing that health professionals should take the lead in guiding patients to the best available medical information on the web. This need has been recognized by governments such as in the USA (Healthfinder), UK (NHSDirect) and elsewhere to develop national gateways and other forms of infomediaries such as kitemarks or seals of approval. The universal challenge of developers of such systems is to establish a reliable and evidence-based process for selecting and recommending certain sites to consumers. A whole new scientific discipline is emerging around the question on how to appraise information for consumers, how to guide consumers to the best available information and how to help consumers in appraising information. We can either take a shortcut and lean back saying that appraising web information does not make sense and it is impossible to guide consumers to the best available information, or we try to develop systems that guide consumers to the best information available. The MedCERTAIN trustmark concept, encouraging and monitoring the use of metadata to build a semantic web, is a decentralised, distributed system, allowing consumers to set their own preferences and needs and to match them against the information they find. Certainly, all this comes not at no costs. The volume of websites is a problem mentioned by Delamothe. However, the the BMJ receives and reviews several thousands of manuscripts per year by using an international network of evaluators who work for free. The Cochrane Collaboration assesses and reviews thousands of clinical trials, also based on an international collaboration of volunteers. A similar approach may work on the web. The "Heidelberg Collaboration" is a recently established group intending to "help people, patients and professionals to identify health information useful to them" 8, e.g. by ensuring interoparability and common standards for selecting / recommending websites among portals / gateways and exploring possibilities for decentralised, distributed rating systems taking into account the power of the Internet. Competing interests: Dr. Eysenbach is scientific co-ordinator of the EU project MedCERTAIN (http://www.medcertain.org)
http://www.yi.com/home/EysenbachGunther/publications/1999/Eysenbach1999e_MethInfMed.pdf 3. Heidelberg Consensus Recommendations on Trustmarks. J Med Internet Res 2000;2:e12 4. Eysenbach G. Towards ethical guidelines for e-health: JMIR Theme Issue on eHealth
Ethics. J Med Internet Res 2000;2:e7 5. Eysenbach G, Yihune G, Lampe K, Cross P, Brickley D. MedCERTAIN: Quality Management, Certification and Rating of Health Information on the Net. Proc AMIA Symp 2000;230-234. 6. Baur C, Deering MJ. Proposed Frameworks to Improve the Quality of Health Web Sites:
Review. MedGenMed 2000; 7. Eysenbach G, Diepgen TL. Towards quality management of medical information on the
internet: evaluation, labelling, and filtering of information [see comments]. BMJ
1998;317:1496-1500. 8. Draft Heidelberg Collaboration Statement of Purpose. J Med Internet Res 2000;2:e11 |
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Gayle L Wolfe, nurse practitioner Michigan Pain Management Specialists, Inc.
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It’s been noted that trustmarks and the like are susceptible to falsification. Even when they are used legitimately to identify ethical sites, the consumers must decide if the information presented is something applicable to their use or pertinent to their situation. They must be educated to be good consumers of healthcare, just as they must be educated to be good consumers of other goods and services. Basic information evaluation criteria can help with evaluation of Web-based information. If they find themselves unable to make sense of the information provided, they must be advised to seek out a knowledgeable consultant (e.g., physician, nurse practitioner or other provider), as they would consult a lawyer if they had a legal issue to untangle. Education of the healthcare consumer is paramount. It is impossible to make the Web safe for all consumers, no matter how many sites have been tagged as “good-for-you” and have a seal of approval, the other sites will still be out there as a trap for the unwary. I have developed a Web site to instruct consumers on the basics of evaluating information on the Web ( http://www.msu.edu/user/wolfegay), and feel this is the way to go (grassroots education). I would appreciate feedback, and am willing to work with others to further develop this project. |
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