Collaboration for Internet Rating, Certification, Labeling and Evaluation of Health Information (MedCIRCLE)
G. Eysenbach 1) 2), for the MedCIRCLE consortium1) Dept. of Clinical Social Medicine, Unit for Cybermedicine, University of Heidelberg, Germany; email: email@example.com
2) Centre for Global eHealth Innovation, University Health Network, Toronto General Hospital, R. Fraser Elliott Building, 4th Floor, room # 4S435; 190 Elizabeth Street; Toronto, ON M5G 2C4; Canada; email: firstname.lastname@example.org
We describe MedCIRCLE, an EU-funded semantic web project to implement HIDDEL (Health Information Disclosure, Description and Evaluation Language) on three European gateway sites for consumer health information: AeZQ (Aerztliche Zentralstelle Qualitaetssicherung) Patienteninformation.de, METGES (Official Medical College of Barcelona) and CisMEF, a gateway developed at Rouen University Hospital. Other health subject gateways, accreditation, or rating services are invited to join the collaboration simply by implementing HIDDEL on their gateways, allowing intelligent agents or client-side software to harvest statements and opinions about the trustworthiness of other websites, assisting users in selecting trustworthy websites. The MedCIRCLE project builds on, expands and continues work on rating health information on the Internet piloted within the MedCERTAIN project. While MedCERTAIN provided the core technologies and software for rating and "trustmarking" health information, MedCIRCLE is built around these technologies and involves a wider medical community to assess health information, demonstrating the power of collaborative and interoperable evaluations in an semantic web environment. Both projects - MedCIRCLE and MedCERTAIN - are complementary projects with the overall objective to develop and promote technologies able to guide consumers to trustworthy health information on the Internet, to establish a global web of trust for networked health information, and to empower consumers to positively select high quality health information on the web. Other aims include refinement and expansion of HIDDEL, to become a standard vocabulary and interchange format for self- and third-party ratings of health information.
Semantic web; e-health; quality of information
There has been considerable debate about the variable quality of health information on the world-wide-web and its impact on public health. 1
While central authorities to regulate, control, censor, or centrally approve information, information providers or websites are neither realistic nor desirable 2, public health professionals are interested in making systems available that direct patient streams to the best available information sources.
The risk for an individual to encounter unsuitable information on the web is compounded of the prevalence (proportion) of inappropriate sites on the web, times the risk (probability) of encountering inappropriate websites (or avoiding them). Thus, to minimize the public health risk from poor health information on the web, public health measures can either aim to reduce the proportion of unsuitable websites on the web (e.g. by educational or organizational interventions targeting health information providers) or aim to enhance the ability of the user to find accurate, trusted information. This ability (or probability to encounter a trusted health site rather than a dubious one when searching for health information can also be influenced by educational measures (teaching users what search engines to use), or by improving search engine technology (the ability of search engines to rank the "better" sites before the rogue sites), or the development of advanced software such as intelligent assistants. The overarching aim of the MedCIRCLE project is to increase the accessibility and findability of trusted websites using "semantic web" approaches 3
Providing trust related metadata
Health professionals have begun to recognise their responsibility to guide consumers and patients to the best available medical information on the web. National governments and medical societies have recognized their responsibility to help users to identify "good quality" information sources. Medical organisations and governments have begun to develop national gateways (Healthfinder.gov, NHSDirect/NeLH), portal sites and other forms of infomediaries such as seals of approval ("kitemarks") in an effort to help consumers to locate trustworthy information resources.
However, current approaches very much come from traditions outside of the Web and do not harness any of the advantages of the Web as a decentralized information system. There is a need for "next generation" tools, intelligent knowledge-based tools, allowing consumers to positively identify reliable health information suitable for their needs, such as intelligent agents or client-side advisory systems for people searching the web for health information. These intelligent tools will be able to aggregate and process statements (descriptions, annotations and ratings, i.e. evaluative metadata) made by a variety of actors and integrate them with the individual preferences of the user, thereby harnessing the power of the Web as a decentralized medium.4
From MedCERTAIN to MedCIRCLE
MedCERTAIN (MedPICS Certification and Rating of Trustworthy Health Information on the Net, http://www.medcertain.org/ ) 5 was an international project co-funded under the European Union's (EU) "Action Plan for safer use of the Internet" running from May 2000 through February 2002. MedCERTAIN established a fully functional demonstrator for a self- and third-party rating system enabling consumers and professionals to positively identify and select high quality information.
The MedCERTAIN approach combines aspects of consumer education, helping and stimulating information providers to implement best practice guidelines, encouraging self-labeling by information providers, external evaluations and monitoring. To obtain a "level-1" MedCERTAIN trustmark, the information provider has to disclose certain information in a standardised, computer readable format using the "Health Information Disclosure, Description and Evaluation Language" HIDDEL 6, formerly known as medPICS 2, expressed in XML/RDF. The same language can be used by gateways to express opinions of evaluators about other sites.
As the number of health related websites worldwide has been estimated as being around 100,000 7, complete coverage by a single third party evaluation body is impossible. Instead, a collaborative approach has to be promoted, whereby different rating services / organisations use comparable standards and a common metadata language.
Similar collaborative networks for the evaluation of health information exist outside of the web. For example, medical research journals receive and review several thousands of manuscripts per year by using international networks of evaluators. The Cochrane Collaboration assesses and reviews thousands of clinical trials, also based on an international collaboration of volunteers. 8
MedCIRCLE is hoped to form the nucleus for a wider international collaboration, intending to help people, patients and professionals to identify health information useful to them 9, e.g. by ensuring interoperability of rating services, identifying common standards for recommending websites and exploring possibilities for decentralised, distributed rating systems by creating a network of evaluators, taking into account the power of the Internet as a networked environment.
While MedCERTAIN provides the technical infrastructure and makes third-party ratings (as well as self-ratings) accessible to consumers, MedCIRCLE focuses on providing the third-party ratings (endorsements/evaluations), which may be made visible if the consumer clicks on the MedCERTAIN trustmark.
The three consortium partners - all subject gateways which describe and/or evaluate health information on the Internet - will attempt to implement the HIDDEL vocabulary on their sites and participate in the endeavour to define and standardise a common metadata vocabulary.
The players and the collaboration model
In terms of providing or using health information or metainformation, four different types of "players" on the semantic web can be distinguished.
- The "health information provider" (HIP) can be referred to as "first party". In the semantic web / MedCIRCLE scenario, the health information provider makes various self-descriptive and self-evaluative statements about himself using RDF/HIDDEL compliant metadata. The HIDDEL elements developed in the MedCERTAIN project allow for example to express a disclosure statement such as who the sponsor of a website is. The MedCERTAIN framework facilitates the use of metadata by providing a questionnaire to the HIP in the course of what's called a "level-1" certification (self-disclosure), and translating the answers of the HIP into XML/RDF/HIDDEL metadata.
- An end user can be referred to as "second party". The user only uses HIDDEL metadata to set his requirements interacting with an intelligent agent or other kind of yet-to-be-developed client-side software able to filter or positively select appropriate information from the web.
- An independent "third party" is typically an individual or organization, e.g. a certification body, which feels special responsibility or knowledge to endorse, evaluate, validate, certify, recommend, approve, peer-review, comment on, or annotate information or services provided by health information providers (or other actors). These third parties could be, for example, gateways, libraries, portal sites, or certifying institutions. Third parties may use HIDDEL metadata to express evaluations or endorsements in a machine-processable way.
- An organization or association (group) of health information providers which sets up a code of conduct or guideline can be called a "fourth party". In a similar way as the "second party" (the user), such a group typically models requirements (for instance, saying that its members should make certain statements), or makes statements such as who is a member of the group.
In practice, each of these actors can have one or more of these roles simultaneously, for example, an evaluating third party can be identical to the actor that sets up guidelines (fourth party).
Figure 1. A model of decentralized quality management as expressed in the HIDDEL RDF "Collaborations Schema" (simplified).
Figure 1 is a simplified version of an RDF schema modeling the relationships between these players and other concepts on the semantic web. Such a schema can serve as a template for each of the actors to make statements about themselves and other actors, and more importantly, it would give "knowledge" to intelligent client-side software or intelligent agents to query this semantic network and to make inferences, eg, about the trustworthiness of given actors based on what others say about them and what they say about themselves.
Consortium partners in MedCIRCLE
The "inner circle" of MedCIRCLE consists of three collaborating gateways ("third party rating organizations") sponsored by medical societies or universities. These will be the first third party rating sites implementing HIDDEL. The "inner circle" will be complemented by other third parties forming an "outer circle", i.e. subcontractors or non-funded partners, who use HIDDEL to express ratings or endorsements. In addition, HIPs who use HIDDEL for self-description can also be considered being part of the collaboration.
Germany: AQUMED - Agency for Quality in Medicine (AeZQ)
The Agency for Quality in Medicine (AQUMED, or Aerztliche Zentralstelle Qualitaetssicherung) was founded in March 1995 as a joint institution of the German Medical Association (GMA = Bundesaerztekammer) and the National Association of Statutory Health Insurance Physicians (NASHIP = Kassenaerztliche Bundesvereinigung), with one of the aims being the co-ordination of quality-assurance initiatives within the medical profession . In 1999 AQUMED established an internet gateway (www.patienten-information.de) for lay persons, listing consumer health information sites which have been evaluated using the DISCERN instrument. Adoption of MedCERTAIN elements and procedures within MedCIRCLE is envisaged.
Spain: Collegi Oficial de Metges de Barcelona (COMB)
The Medical Colleges in Spain are public institutions with a legally established mission to represent medical practitioners as a whole. The Official Medical College of Barcelona (COMB) represents the medical profession of Barcelona and all of it's regions. It is a "service-focused business" at the disposal of medical professionals and their families, but also a "guardian" of the medical practice to insure that the public is guaranteed quality medical attention and services.
In the project "Web Medica Acreditada", COMB has to date accredited more than 300 Spanish health websites.
The Official Medical College of Barcelona (COMB) is a centennial corporation in Spain, created to defend the interests of the medical profession and ensure that it adheres to ethical and scientific norms in order to offer the best healthcare services to society. Internet has the capacity to transmit a volume of information that is both difficult to control and widely available, the Official Medical College of Barcelona emphasizes the necessity to contribute to the accreditation of medical/healthcare information diffused through the network, and the importance of offering support and assistance, whenever necessary, to physicians and institutions who wish to access this information and be present within the Internet.
The Official Medical College of Barcelona promotes the Certified Medical Web Site Seal of METGES on line (http://wma.comb.es). From 1999 the seal, created to serve as a virtual reference point of the medical community, seeks to establish a set of norms that the owners of medical and healthcare websites can voluntarily follow from Spain and Southamerica.
The COMB has established a process of certification, which includes a standing committee and a delegated committee. These committees serve as consultants to the web site so that the contents, resources, and information of these adapt to the norms of the seal.
France: CISMeF (Catalog and Index of French-speaking resources)
The project CISMeF is located at the Rouen University Hospital. The objective of CISMeF (Catalog and Index of French-speaking resources) 10 is to assist the health professional during the search for electronic health information available on the Internet (http://www.chu-rouen.fr/cismef). CISMeF uses two standard tools for organizing information: the Medline bibliographic database MeSH thesaurus and the Dublin Core metadata elements.
MedCERTAIN (2000-2001) and MedCIRCLE (2002-2003) attempt to create a critical mass of metadata, so that industry jumps in and develops intelligent Web browsers and agents able to aggregate and interpret this data. MedCIRCLE will be an open collaboration of organizations implementing the HIDDEL vocabulary.
The semantic web will greatly magnify the challenges, but also the opportunities, created by the human-readable World Wide Web. On the opportunity side, the semantic web will give even greater power to the consumer to determine the trustworthiness of a given health information provider or service than the Web in its current form.
The results of a recent qualitative study combining interviews and usability laboratory studies conducted in the MedCERTAIN project ;11 has shown that many consumers use inappropiate techniques to critically appraise health information on the web. It may be beneficial to develop client-side tools assisting citizens to find high-quality information and to appraise the quality of information using the right markers. Semantic web approaches using intelligent software may open up new ways for educating consumers and reaching less-savvy consumers, because part of the intelligence and knowledge currently required to critically appraise information on the consumer site could be built into search tools. The feasibility and use of this approach and the impact on consumers is subject of ongoing investigation within the MedCIRCLE project.
Christian Koehler helped with modelling the "collaborations schema" in Protege 2000, a software package developed by Stanford Medical Informatics. The ideas presented here were developed in the course of the MedCERTAIN project, funded by the European Union under the Action Plan for Safer Use of the Internet (http://www.saferinternet.org/), that consists of: the University of Heidelberg, Department of Clinical Social Medicine, Germany; the University of Bristol, Institute for Learning and Research Technology (ILRT), UK; and The Finnish Office for Health Care Technology Assessment (FinOHTA) at the Finnish National Research and Development Centre for Welfare and Health (STAKES). The MedCIRCLE project also is funded by the European Union under the Action Plan for Safer Use of the Internet, and consists of: the University of Heidelberg, Department of Clinical Social Medicine; Metges, Medical College of Barcelona, Spain; CISMeF, University of Rouen, France; and Aerztliche Zentralstelle fuer Qualitaetssicherung, Germany.
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Prof. Gunther Eysenbach, born in Berlin/Germany on March 22nd, 1967, studied medicine in Munich, Freiburg and London, graduated in 1996 and received a research based medical doctorate degree (Dr. med.) magna cum laude from the University of Freiburg in Germany. He has a background in medicine, medical informatics and public health. From 1999-2001 he established and headed a research group on cybermedicine and eHealth at University of Heidelberg (Germany), Dept. of Clinical Social Medicine. He recently moved to Canada, where he now holds an academic appointment as Associate Professor at the Department of Health Policy, Management and Evaluation, University of Toronto. He also is a Senior Scientist at the Division of Medical Decision Making and Health Care Research, being a core faculty member at the Program in eHealth Innovation. He continues to work at the Department of Clinical Social Medicine in Heidelberg at the MedCERTAIN and MedCIRCLE projects.
He is author of a German textbook for computers in medicine (which he wrote at the age of 24), editor of a German loose-leaf book on computers for physicians, founding editor and editor-in-chief of the international Journal of Medical Internet Research (which was selected for Medline indexing in 2001), editor of an English-language book on Medicine and Medical Education in Europe, and editorial board member of various medical journals. Dr. Eysenbach has authored more than 80 publications, including more than 30 book-chapters as well as several pioneer studies and comments on cybermedicine, e-health and Consumer health informatics, published in respected international medical journals such as JAMA, BMJ, Lancet.
He is principal investigator and lead author of grant proposals (MedCERTAIN, MedCIRCLE) raising a total of about 1,32 Mio Euro (2.6 Mio DM) funding from the European Union.
Dr. Eysenbach, who has been dubbed "cyberphysician" by the British Medical Journal, is recognized by many as one of the leading thinkers on eHealth, is a frequent keynote speaker and has been interviewed by most of the major print and electronic media (more than 80 press reports and TV/radio interviews)
His main research interests lie at the intersection between medical informatics and public health ("public eHealth").
Personal webpage: http://yi.com/ey