Dr. Günther Eysenbach, the leader of the research group for cyber-medicine at the University of Heidelberg, Germany, declared at the EHFG 2000 Conference that studies have proved that up to 80 percent of the information provided on the Internet is either incomplete, outdated or simply wrong. The access to information for anyone may well mean "patient empowerment", enabling health consumers to make informed choices and to take a more responsible role for their health. The quality of informed choices, however, depends on the quality of information on which decisions are taken.
In principle, there are two ways of controlling the quality. Information to be published could be restricted by law. Given the trans-border nature of the Internet and the lack of control over the provision and use of information, this approach is not very practicable. Moreover, it is questionable, whether it is desirable in democratic societies. The alternative is self-restriction. The information providers can commit themselves to quality and have the quality of the information they provide assessed by third parties. If quality criteria are established and controlled by truly independent parties, then they could provide a reliable basis for consumers to decide which information to trust.
A number of organisations, such as the Swiss Health on the Net Foundation and the United States-based Internet Health care Coalition have established lists of quality criteria for Web sites. The main criteria identified include:
- Authority: advice is only to be made by qualified professionals, unless otherwise stated;
- Complementarity: information is designed to support rather than replace medical advice;
- Confidentiality must be granted;
- Attribution: information needs to be supported by clear references to source data;
- Justifiability: claims relating to outcomes of a treatment need to be supported by appropriate and balanced evidence;
- Transparency: contact details need to be given for contact and further information, and financial interests and sponsorship need to be clearly indicated, including a description of the advertising policy;
In the long run, good quality of information on the Internet is not only in the interest of consumers but equally at the benefit of the information providers. Providing consumers with quality information is able to reduce anxiety and promote more effective relationships with health professionals. Well-informed consumers are expected to have improved health outcomes and an optimised understanding of the treatment choices has been shown to have a positive impact on the health status, which is totally independent of participation in the decision-making process.
In order to ensure excellent quality of health information on the Internet, the European Commission is supporting projects which aim at establishing good practice and disseminating Codes of Conduct. In addition, the World Health Organisation (WHO) has started reflecting on how quality could be assessed and on how good quality sites could be labelled. One of the projects funded by the European Commission in this area is MedCertain which is standing for MedPICS Certification and Rating of Trustworthy and Assessed Health Information on the Net. This decentralised system will be based on the co-operation of individual organisations evaluating, assessing, accrediting and recommending health information on the Internet.
A fully functional self- and third-party rating system will be established to enable customers to select information. Backed by a global technical and organisational infrastructure, trusted medical societies, libraries, medical experts, health consumer organisations, and responsible health information providers will co-operate in disseminating and in advocating best practice guidelines for e-Health providers. The system will as well educate users to distinguish good quality. The MedCertain project has been started in June of 2000.
MedCertain will demonstrate how PICS/RDF/XML-based content rating and filtering technologies are able to automate and exploit value-adding resource description services. The proposed technology strategy combines a pragmatic use of simple existing technologies for data acquisition with a future-oriented standards policy intended to lead the evolution of definitions for information-mediation services. The MedPICS standard, the Medical Platform for Internet Content Selection, is a further development of PICS which has been designed by the Massachusetts Institute of Technology¥s World Wide Web Consortium, allowing people to electronically distribute descriptions of digital works in a simple, computer-readable form.
A second health information rating system is called Discern and constitutes a set of quality criteria initially developed for written consumer health data about treatment choices. An Internet version of the instrument is currently under development. The tool consists of 15 questions representing separate quality criteria, plus an overall quality rating which is an intuitive summary of answers. Having answered these questions, the reader is able to select and reject information or highlight its weaknesses. You can visit the project home page to learn more about the MedCertain initiative.