Gunther Eysenbach's current projects

Research Themes:
I. What are the information needs and preferences of health professionals and consumers? 
II. How are consumers and health professionals searching for and digesting information?
III. What is the impact of information on outcomes, and how can positive effects be maximised?
IV. How can we enable information access and guide consumers and health professionals to high-quality health information?
V. Outcomes research and methodological issues of Internet research
VI. Other topics

Project Status: 1= protocol development / pending grant application; 2= ongoing data collection / data analysis; 3=finished / unpublished - manuscript in preparation; 4=partly published

* = funding pending

(Note that finished and completely published projects are not showing up in this list.)

Acronym / URL

Description

Theme

Status

MedCERTAIN/

MedCIRCLE

http://www.medcircle.org

Collaboration for Internet Rating, Certification, Labeling and Evaluation of Health Information

EU-funded project (formerly know as MedCERTAIN) to implement HIDDEL (Health Information Disclosure, Description and Evaluation Language) on three European gateway sites: ÄZQ (Ärztliche Zentralstelle Qualitätssicherung) Patienteninformation.de, METGES Official Medical College of Barcelona and Rouen University Hospital (CisMEF).

MedCIRCLE is a collaboration of European health subject gateways, accreditation, or rating services. The 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. 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 "filter" or positively select high quality health information on the web.

The primary aims of MedCIRCLE are

· Implementation of the XWL/RDF "Health Information, Disclosure, Description and Evaluation Language" (HIDDEL) on Spanish, French, English, and German health gateways, to demonstrate and ensure interoperability of rating services and to enable harvesting and dissemination of third-party ratings through the MedCERTAIN trustmark and other avenues,

· refinement of rating and evaluating procedures at the MedCIRCLE partner sites and striving for methodological convergence,

· refinement and expansion of HIDDEL, to become a standard vocabulary and interchange format for self- and third-party ratings of health information.

Description of Work

HIDDEL (Health Information Disclosure, Description and Evaluation Language) is standard vocabulary / metadata language (which can be expressed as PICS/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.

The MedCIRCLE project will involve existing health information subject gateways (portal sites/rating/accreditation services) across Europe, stimulating the implementation of the HIDDEL meta-data vocabulary, demonstrating how interoperability and data exchange between heterogeneous subject gateways / rating services can be achieved, and how decentralised evaluations can be performed and harvested.

The "inner circle" of MedCIRCLE will consist of a consortium of three European health portals in Spain, France, and Germany, which are already active in the business of rating/evaluating/accrediting health websites, two of which are backed by respective professional medical associations (German Medical Association and Official Medical College of Barcelona). MedCIRCLE will further encourage other health gateways, portal sites and rating services to join the collaboration (by implementing HIDDEL) forming and "outer circle" of organisation providing evaluations of health sites.

References:

P-07. Mayer MA, Darmoni SJ, Fiene M, Kohler, Roth-Berghofer TR, Eysenbach G.
MedCIRCLE: Collaboration for Internet rating, certification, labelling and evaluation of health information on the World-Wide-Web.
In: The New Navigators: from Professionals to Patients. R. Baud et al. (Eds). IOS Press.
Proc MIE 2003: 667-672

P-06.Eysenbach G, Köhler C, Yihune G, Lampe K, Cross P, Brickley D. A metadata vocabulary for self- and third-party labeling of health web-sites: Health Information Disclosure, Description and Evaluation Language (HIDDEL).
Proc AMIA Annu Fall Symp (JAMIA Suppl); 2001: 169-173

P-05.Eysenbach G, Köhler C, Yihune G, Lampe K, Cross P, Brickley D, A framework for improving the quality of health information on the world-wide-web and bettering public (e-)health: The MedCERTAIN approach.
In: Patel V, Rogers R, Haux R (eds.). Medinfo 2001, Proceedings of the Tenth World Congress on Medical Informatics. Amsterdam: IOS Press, 2001; pp. 1450-1454

P-04.Eysenbach G, Diepgen TL, Lampe K, Brickley D. MedCERTAIN: Quality Management, Certification and Rating of Health Information on the Net.
Proc AMIA Annu Fall Symp (JAMIA Suppl); 2000: 230-234

P-03.Eysenbach G, Diepgen TL, Lampe K, Brickley D. EU-Project medCERTAIN: Certification and Rating of Trustworthy and Assessed Health Information on the Net.
In: Hasman A, Blobel B, Dudeck J, Engelbrecht R, Grell G, Prokosch, HU (eds.): Medical Infobahn for Europe. Studies in Health Technology and Informatics, Vol. 77. Amsterdam: IOS-Press, 2000; pp. 279-283.

European Commission, Action Plan for Safer Use of the Internet (IAP)

PI: Gunther Eysenbach

500.000 Euro (total) over 18 months

2002-2003

European Commission, Action Plan for Safer Use of the Internet (IAP)

PI: Gunther Eysenbach

820.000 Euro (total) over 18 months

2004-

Project continues as non-profit association under the name "MedCIRCLE Collaboration", with the Centre for Global eHealth Innovation as GOC (Global Operating Centre).

Gateways and portals are invited to become a MedCIRCLE member.

Christian Koehler (AKS),

Thomas Roth-Berghofer (AKS/DFKI)

et al.

IV

2

I3MPACT

Development and Evaluation of Internet Courses for Cancer Patients

In this project, a team of health professionals, health educators, eHealth experts and patients from self-support groups will develop a course of study for an Internet school for cancer patients and their relatives. These courses will be implemented and evaluated using a randomized controlled trial (RCT) design. The research team will evaluate the impact of these courses on the users, determining consumer demand and patient outcomes. The classes will consist of one-day tutorials where Internet-trainers will teach patients how to access and retrieve quality information and how to communicate with peers over the Internet. The project will evaluate the effect of these courses and Internet use on patient satisfaction, outcome, and demand in a randomized controlled trial, with a waiting group as control.

References:

O-17. Eysenbach G. The impact of the Internet on cancer outcomes.
CA Cancer J Clin Nov/Dec 2003; 53(6): 356-371

P-09. Eysenbach G, Burnett M, Catton P, Gospodarovicz M, Jadad A, Jewett M, Trachtenberg J, Warman J. Internet schools for cancer patients: A low-tech approach to bridge the digital divide and to address the quality problem on the web?
Medinfo 2004 (submitted)

Change Foundation

Can$ 100.000 (total) over 24 months

PI: Gunther Eysenbach

Co-applicants: Mary Gospodarowicz, Alex Jadad, Michael Jewett, John Trachtenberg

II. III, IV

2

Healthcare providers and consumers rely on clinical practice guidelines and systematic reviews to make informed decisions, establish policy and plan research agendas. These guidelines and reviews are increasingly offered and accessed over the Internet, but there has been little or no research into what kind of format is the best to convey health information to significantly enhance both healthcare provider and consumer knowledge. The objective of this study is to assess, improve and test various formats of guidelines and make design recommendations to guarantee increased information retention. This project will use different qualitative research methods, including focus groups, comparisons between different formats and video-taping people accessing guidelines and reviews online to identify any problems during their interaction. The aim is to make guidelines and reviews concise and easily understood, especially when they are electronically presented. The results of this study will develop a checklist of design features for those creating guidelines and reviews for both the healthcare provider and the consumer. It is expected that the findings of this study will greatly influence the design of existing and future clinical practice guidelines and systematic reviews. The design recommendations will educate and inform the users of this online information, and have a significant influence on public health.

Canadian Institutes of Health Research (CIHR)

Can$ 200.000 (total) over 24 months

PI: Gunther Eysenbach

Co-applicants: George Browman, Alex Jadad, Andre Kushniruk

The aim of the SUSHI-Q project is to develop and validate an electronic questionnaire instrument that can be used as standardized feedback form, scorecard and quality monitoring instrument for developers of health information websites. The instrument is intended to measure the user experience with a health website. SUSHI-Q will be an essential tool for health information providers: to achieve user-centred design based on their feedback, to measure progress when iteratively refining their website, and to compare their site against other websites.

Canadian Institutes of Health Research (CIHR)

Can$ 255.000 (total) over 36 months

PI: Gunther Eysenbach Co-applicants: Harvey Skinner, Alex Jadad, Malcolm Koo

DAERI

German, English:

http://www.medcertain.org/daeri

Korean:

http://www.healthconsumer.or.kr/complaint/purpose.html

Database of Adverse Effects Related to the Internet

Background: Much has been written, commented and speculated about the variable information quality of information found on the Internet and the presumed impact of the Internet on patients. Other issues discussed in the medical community include the assumed harmful effects of Internet prescribing of Rx drugs or medical consulting in the absence of a pre-existing face-to-face patient-physician relationship, the negative impact of pornographic (and other “adult”) material on minors, the addictive potential of the Internet, or the potential of the Internet to promote suicide. Very little evidence is available on how well founded these concerns are.

Objective: The “Database of Adverse Events Related to the Internet” (DAERI) is a first attempt to systematically collect the “evidence” in form of case studies on possible harm caused by the Internet. The aim is to collect qualitative data in order to suggest measures which may minimize the risks involved in using the Internet by consumers for health information. We will analyze this data in order to suggest and conduct systematic and experimental studies investigating possible problems related to the Internet in detail and to quantify (investigate the prevalence) of possible problems.

Methods: Collection of case studies from physicians about patients who have been harmed by Internet information and qualitative analysis..

This includes case descriptions of patients who have been harmed (psychologically or physically) by misinformation on the Internet; Patients who have misinterpreted information on the Internet; Seeing a physician too late because of Internet research or Internet diagnosis;  etc.

Reference:

L-11. Eysenbach G, Köhler C. Does the internet harm health? Database of adverse events related to the internet has been set up.
BMJ 2002;324:239
http://bmj.com/cgi/content/full/324/7331/238/a#resp1 

(in Korea: KIHASA)

please contact GE if you would like to set up mirror sites of this database

III (II)

2

Webcitation

http://www.webcitation.org

IV

1

The PIPS project is a major international collaborative and interdisciplinary eHealth research & development project funded under the EU FP6 IST programme with 18 partners including 5 Member States of the European Union (EU), Switzerland, Poland, Israel, the People's Republic of China, and Canada (represented by the applicant, the Centre for Global eHealth Innovation, a joint institution of the University of Toronto and the University Health Network [UHN]). The applicant will take a leading role in identifying, developing, and implementing semantic web technologies for quality assurance and trust management, to ensure that information within the PIPS platform is trustworthy. The Centre will further develop knowledge management tools for health professionals and consumers that utilize the PIPS infrastructure, and co-develop and test applications for the PIPS platform, and customize and evaluate them for the Canadian health care system.

European Commission

2004

Canadian Institutes for Health Research (CIHR)

2004-2006

Natural Sciences and Engineering Research Council (NSERC) (pending)

PI: Gunther Eysenbach (Canadian part)

Co-applicant (NSERC): Khaled El Emam

The purpose of this project is to identify and synthesize the literature on e-health and mental health services and to identify best practices on the development and implementation of e-health practices to serve people with mental illness. One of the goals of this project is to gain a better understanding of how current e-health practices address issues such as consent, capacity, and confidentiality, among others. The specific questions in the proposed study will consider the most prevalent mental health illnesses. These questions will be considered separately for all distinct topic areas, which include capacity, consent, confidentiality and others. The overarching questions are:

1-       What are the current questions, models, and types of e-health practices for mental health services?

2-       What types of mental health e-health practices are in development, are being implemented, or have been evaluated?

We propose to undertake the synthesis of the e-health literature for mental health services in three ways; 1) a systematic review of e-health practices, 2) hand search of journals, the Web, and relevant government and non-government reports, 3) asking our expert research team to identify key literature in this area. We anticipate that there are three main activities in undertaking this research study. First, undertaking a literature synthesis on the development and implementation of e-health practices for mental health services. Second, to identify best practices in e-health practices for mental health services. Finally, to transfer of the findings to key stakeholders.

Increased use of knowledge in this area will identify important issues that confront policy actors, decision makers, and health service providers such as procedures and standards to safeguard against disclosure, and secure privacy interests. Additionally, increased knowledge utilization will inform and expedite policy development and implementation  by delineating facilitators and barriers to e-health development and implementation. As a result, it will be possible to establish linkages within the system and other health and social service systems. Gaps in the literature will be identified, thereby enabling decision makers and funding agencies to target resources to understudied areas. Identifying best practices will afford policy actors and decision makers the underpinning to formulate policy, as well as meaningful benchmarks to compare evolving and emerging best practices. Increased use of knowledge will ensure that e-health practices attain an appropriate balance between individual protections and economic efficiency.  Consequently, this will foster confidence and lead to fuller, more open disclosure of sensitive information by patients. Ultimately, this will result in better care, increased validity and reliability of mental health services in Ontario..

Ontario Ministry of Health and Long Term Care (MOHLTC)

Can$ 53.300 (total) over 6 months

PI: Gunther Eysenbach

Co-applicants: L. Suzanne Suggs, Chris McIntyre, Harriet MacMillan, K. Ann McKibbon, Mary Ann O’Brien, Lina Santaguida

http://yi.com/p2p

In this systematic review we try to identify all randomized trials and other studies with control group (including before/after studies) where authors have investigated the impact of virtual communities on social or health outcomes

PI: Gunther Eysenbach

with: John Powell, Anita Stern, Carlos Rizo

JMIR

http://www.jmir.org

Journal of Medical Internet Research

Online journal publishing high-quality, peer-reviewed articles on Medicine and Internet (eHealth). The journal also serves as a “publishing laboratory” to explore and experiment with novel ways of scholarly communication (e.g. open source publishing, Multimedia appendices, dynamic articles with real-time statistical analysis etc.). JMIR, now in its third year, has recently (7/2001) been selected by the US National Library of Medicine to be indexed in Medline/Index Medicus/PubMed and is under evaluation to be listed in the Science Citation Index and several other indexing services/databases. JMIR is also serving as a test-bed to experiment with cross-media publishing techniques, in particular XML. JMIR is working on inclusion in PubMed

Network of Centres of Excellence in eHealth Research

Open Society Institute

PI: Gunther Eysenbach

V

4

http://yi.com/oasis

OASIS is a electronic platform for a series of Open Access journal titles. The OASIS Journal of Medical Research is a radically novel model of a peer-reviewed general medical research journal in the Internet age, entirely web-based and Open Access, managed by virtual communities of editorial committes and peer-reviewers.
 

Papers published in the OASIS Journal of Medical Research will be indexed in pertinent databases such as Medline and Pubmed Central. In fact, you will find no OASIS articles published on this site as all articles will be directly published in Pubmed Central, the U.S. National Library of Medicine's digital archive of life sciences journal literature, as well as in various Open Access archives. Publication in Pubmed Central guarantees preservation and widest possible dissemination.

The OASIS Journal will experiment with radically innovative peer-review and business models, mainly based on the idea that authors pay a nominal fee upon submission. This fee will partly be used to pay peer-reviewers to deliver a speedy and high quality peer-review. The OASIS Journal offers extremely speedy editorial decisions, which will be made by "just-in-time" ad-hoc editors. This means that there is no fixed editorial board, but just-in-time editors will be selected from a dynamic peer-reviewers database based on reputation/trust ratings. Reputation and trust management processes, based on peer-reatings and user feedback (similar to amazon, ebay, or epinions) as well as based on their number of publications (harvested from PubMed) are further essential features of the system.

OASIS J Med Res consists of a number of journal titles which are defined by quality rather than topic areas (as the articles are indexed they can be dynamically aggregated into topic-specific issues based on the preferences of the user).

Reviewers and editors "triage" submitted manuscripts to one of these journals, advising the author in which of these journals the paper can be accepted. If a paper is rejected for OASIS J Med Res A (the journal with the highest rejection rate and the most important papers), it will automatically be considered for OASIS B, and so on, without the author having to reformat and resubmit the paper . In addition, the OASIS J Med Res Reviews journal accepts reviews and opinion pieces. All these virtual journals will be published in Pubmed Central.
 

PI: Gunther Eysenbach

30 March - 1 April 204

PI: Gunther Eysenbach

With: Mary Gospodarvicz, Alex Jadad