1	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways
2	Participants representing Health Information Gatways AFGIS (Germany) BIOME/OMNI (UK) Healthfinder (US) HealthInsite (Australia) HON (Switzerland) NeLH (UK) URAC (US) AQuMED (Germany) CISMeF (France) COMB/WMA (Spain) Representatives from: European Commission WHO US DHHS
3	Aims / questions of the workshop Foster collaboration What is the "semantic web" for metadata provider? How can third-party evaluation services (health gateways, accreditation services etc.) collaborate to achieve interoperability and to create a semantic web of evaluated health information? How can open source semantic web tools, developed in the EU projects MedCERTAIN and MedCIRCLE, be used by third-party evaluation services? How can third-party evaluation services stimulate health information providers to provide metadata? How can end-users (consumers, researchers and policy makers) use and benefit from such technologies?
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6	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Dr. Gunther Eysenbach
7	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Collaborative? Open? semantic web? Web of trust? Interoperability? Health Information Gateways?
8	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Collaborative? Open? semantic web? Web of trust? Interoperability? Health Information Gateways?
9	Health Information Gateway “Third parties” Active in the field of Annotating Describing Cataloguing Evaluating Certifying health information or health information providers Providers of meta-information (information about information) Add value
10	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Collaborative? Open? semantic web? Web of trust? Interoperability? Health Information Gateways?
11	Collaboration MedCIRCLE is a collaboration of health information gateways Collaboration focuses on technical collaboration Aim: Wider collaboration of health information gateways beyond MedCIRCLE MedCIRCLE may serve as a model or crystallization nucleus for a wider collaboration MedCIRCLE stimulates such a collaboration A possible role model: Cochrane Collaboration
12	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Collaborative? Open? semantic web? Web of trust? Interoperability? Health Information Gateways?
13	“open” collaboration Open Source Open Archive Open Directory Open for trusted health gateways to join
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15	open Open Source Open Archive Open Directory Open for all health gateways to join
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17	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Collaborative? Open? semantic web? Web of trust? Interoperability? Health Information Gateways?
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20	Towards a collaborative, open, semantic web of trust for health information on the web: Interoperability of Health Information Gateways Collaborative? Open? semantic web? Web of trust? Interoperability? Health Information Gateways?
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23	Focus of this workshop Technical issues Audience: Infomediaries / health information gateways Vision of interoperability and collaboration Plenty of room for discussion
24	Possible outcomes of the workshop White paper? Steering group for a collaboration? Joint (funded) projects?
25	Arguments and counter-arguments against rating health information Too many sites [solution: collaboration] (health) information outside of the web is not rated [wrong] No gold standard for “accuracy” [solution: make conflicting views transparent] People don’t care [semantic web technologies] Information changes quickly [evaluate structure and process, health information provider shares responsibility]
26	Arguments and counter-arguments against rating health information Legal complexities [question of disclaimers]
27	MedCIRCLE A collaboration for Internet rating, certification, labeling and evaluation of health information
28	"MedCERTAIN (2000-2001)" MedCERTAIN (2000-2001) - Certification and Rating of Trustworthy and Assessed Health Information on the Net University of Heidelberg (G Eysenbach, G Yihune, C Köhler), ILRT Bristol (D Brickely, P Cross), FinOHTA/STAKES (K Lampe) Development of HIDDEL (Health Information Disclosure, Description & Evaluation Language) Open source tools (Archer) to annotate health information in XML/RDF/HIDDEL MedCIRCLE (2002-2003) - Collaboration for Internet Rating, Certification, Labelling and Evaluation University of Heidelberg (G Eysenbach, C Köhler), AQuMed/German Medical Association/KBV (M Fiene), Medical College Barcelona (MA Mayer), CISMEF France, (S Darmoni), DFKI German Center for Artificial Intelligence (T Roth-Berghofer) Broad implementation of XML/RDF/HIDDEL on digital libraries, portals, gateways, kitemarking/certification services and health websites
29	MedCERTAIN Consistently misrepresented (even in the peer-reviewed literature) as “kitemark” project on par with e.g. URAC Decentralized, collaborative infrastructure Emphasis was on metadata language development and evaluation Vision: collaborative, distributed evaluation, semantic web, downstream filtering
30	Building blocks for a semantic web of trust in the health field A metadata vocabulary (in XML/RDF) containing elements expressive enough to express disclosure information demanded in ethical codes Encouragement of information providers using the language to make disclosure statements in a standardized, machine-processable way A collaboration of organisations using HIDDEL for third-party annotations (evaluations) of information providers A community of health information providers and third-party certifiers using a standard language to express their annotations and self-descriptions This would allow the development of client site tools and intelligent agents supporting consumers in selecting websites complying to their needs and preferences.
31	Building blocks for a „semantic web of trust“ in the health community A metadata language (in XML/RDF) containing elements expressive enough to express disclosure information demanded in ethical codes Information providers using the language A collaboration of organisations using HIDDEL for third-party annotations (evaluations) of information providers
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34	Provision of metadata Is a quality criterion per se Should be included on the eEurope criteria!
35	Why metadata improves the efficiency of retrieving information from search engines prevents health websites from mistakenly being blocked by pornography filter-software enables client-side tools to automatically compare descriptions and disclosure statements against pre-set personal preferences of the user (P3P) helps health information providers to be explicit and unambiguous when making statements about their site or services, or about others improves access to disclosure and description statements, otherwise often hidden somewhere on a site in small print it enables intelligent “semantic web” agents to roam the Internet and to retrieve information and services suitable for the given user evaluative metadata (people making statements about other resources) enables to weave a “web of trust” helping consumers to locate trustworthy information enables to measure progress in the field of health communication on the web (proportion of health websites making disclosures) Metadata -> RDF -> semantic web
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37	Metadata levels Level 1 (Transparency mark) (provided by Information Provider) Self-rating, self-description (target audience, purpose, localisation), disclosure (authors, sponsors, policies...) Level 2 (level 1 information checked): (provided by non-medical expert rater) Level 1 claims and formal website criteria verified Level 3: Trustmark (provided by medical experts) Health information content assessed by a third party
38	HIDDEL Health Information Disclosure Description & Evaluation Language
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42	Ethical Codes Health on the Net (HON) Code of Conduct July 1996 (www.hon.ch/HONcode/Conduct.html); Guidelines for medical and health information sites on the Internet, by the American Medical Association (AMA) March 2000 (www.ama-assn.org/about/guidelines.htm); Ethical principles for offering Internet health services to consumers, from Health Internet Ethics (Hi-Ethics) May 2000 (www.hiethics.org/Principles/index.asp); International eHealth Code of Ethics, by the eHealth Ethics Initiative May 2000 (http://www.jmir.org/2000/2/e9/).
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48	HIDDEL contains elements from Dublin Core DISCERN Elements frequently used to evaluate websites and health information
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50	Building blocks for a „semantic web of trust“ in the health community A metadata language (in XML/RDF) containing elements expressive enough to express disclosure information demanded in ethical codes Information providers using the language A collaboration of organisations using HIDDEL for third-party annotations (evaluations) of information providers
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61	Building blocks for a „semantic web of trust“ in the health community A metadata language (in XML/RDF) containing elements expressive enough to express disclosure information demanded in ethical codes Information providers using the language A collaboration of organisations using HIDDEL for third-party annotations (evaluations) of information providers -> web of trust
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64	How do consumers search and appraise health information on the web today?
65	Summary Collaboration of trusted health subject gateways, medical associations, accreditation, certification, or rating services, which all share the common goal to evaluate, describe, or annotate health information. HIDDEL is a standard vocabulary / metadata language (which can be expressed as RDF/XML) designed to be used by 1) information providers to describe and disclose properties of e-health services (self-rating) and 2) third-parties, e.g. by subject gateways, to express third-party opinions about health information providers. HIDDEL allows consumers to access disclosure (self-rating) information on health websites in a standardised way, and subject gateways to describe which aspects of the site have been evaluated by them and with what results.
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