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Best Practices
- Ongoing Projects
Quality Criteria
- Draft Guidelines
-- Definitions
- Workshop Report
The workshop was arranged and held pursuant to the eEurope 2002 Action Plan: Health Online. The workshop was held on 7 and 8 June 2001 in Brussels.
A total of 58 invited participants from all EU Member States, Norway, Switzerland and the USA took part in the meeting. The group was composed of delegates from Member States’ governments, delegates from industrial, medical and patient interest groups as well as key invited experts from the field of health information ethics.
The meeting was opened by Commissioner Liikanen. He outlined the important role played by health related websites, noting in particular that “more Internet users have sought medical information on the Web than have shopped online, looked up stock quotes, or checked sports scores” (PEW May 2001). The commissioner further noted the unique opportunity offered by eEurope to address the important matter of quality assurance for health related websites.
Mr Sauer presented the Commission’s proposed Public Health Programme and outlined how work on health information fits into the overall health strategy that is being pursued in the Community.
Following the two opening presentation, which set the scene at the EU level, seven key experts with personal experience of setting up and running services aimed at providing quality assurance for health related websites were invited to make presentations.
HON is one of the oldest players in the field. It operates a website of qualified health information from peer-reviewed journals, as well as a Code of Conduct for Medical and Health Websites. The HON ‘seal’ may be used by anyone applying to HON and self-certifying that they undertake to abide by the 8-point code of conduct. Professor Scherrer presented some of the experiences of HON and outlined some of the further needs, in particular the concept of an automated editorial policy.
Dr Risk was a founder member of the Washington-based Internet Health Coalition, which developed a set of guidelines for the self-regulation of health related websites through extensive collaboration with healthcare providers and the eHealth industry. It published in May 2000 its eHealth Code of Ethics. Dr Risk outlined the issues tackled by the Washington eHealth Code.
Dr Shepperd presented the DISCERN tool, which she developed in collaboration with colleagues based in the UK. The tool allows health website users to follow a simple step-by-step set of questions in order to assess if a chosen website is providing quality information.
Ms Gray’s presentation focused on the work of the team she represents, which provides an on-line resource called OMNI (Organising Medical Networked Information). This resource provides a gateway to evaluate quality Internet resources aimed at students, researchers and practitioners in health and medical sciences.
Mr D'Andrea presented the work of URAC a not-for-profit Washington-based organisation which has a long history in accreditation of health management organisations and which will in the next months begin a programme for the accreditation of the websites of such organisations.
Mr van Melick presented the QMIC system developed by TNO which operates a controlled self-certification with an external reference system for transparent assurance of the quality of health related websites.
Dr Eysenbach is the leader of the MedCERTAIN project, which is in the process of establishing a trustmark and metadata scheme for evaluated health information. He presented the basic concepts of the MedCERTAIN application.
The initiatives currently underway in France, Germany and The Netherlands were presented, as well as commentary from Sweden and Finland on possible future initiatives.
The Workshop then broke into three groups for the remaining 2.5 hours of the day. Three groups of approximately 20 people each discussed the following questions from the perspective of consumers of health related websites, health professionals and administrators as providers of health related websites, industrial groups as providers and consumers of health related websites.
WHAT does ‘quality’ mean in terms of health related websites?
Target: identify 10 (+/-) elements that you believe significantly add to the quality of a health related website.
WHO do you believe should play a role in assessing the quality of a health related website according to the criteria you have agreed upon?
At what stage and for what purpose would these people be involved?
Target: describe the roles and functions of the key players.
HOW do you believe the key players listed could best assess whether the criteria listed have been met?
Target: present some key advantages/challenges of various approaches to implementing
quality assurance system.
The following morning the rapporteur of each group reported back on the discussions and a lively discussion followed each presentation.
In summary, there was a general consensus on the key quality issues to be included. Discussion concentrated on the importance of promoting:
Transparency of purpose of a site, its authors and funding.
Clear adherence of existing EU and national legislation and policy on confidentiality of person identifiable data, responsibility of information society service providers. Note was made of Directive 95/46/EC on Data Protection and the Recommendation of the Data Protection Working Party (especially the recently drafted Recommendation 2/2001 on Minimum requirements for the Collection of Data On-line), Directive 97/7/EC on Distance Contracts, Directive 2000/31/EC on E-Commerce and Directive 97/66/EC on Privacy in Telecommunications.
Education of both consumers and suppliers of health related websites on basic standards of quality.
The examination of systems of accountability, including self-regulation, third party certification, government surveillance. Note was made of Directive 92/28/EEC on Advertising of Medicinal Products for Human Use, and the proposed review of that legislation.
The results of the discussion as well as the three working groups provided the basis of the Drafting Group, which met in the afternoon in order to propose draft Guidelines for Quality Criteria.
It was agreed that the target should be a snappy one-page summary of key criteria supported by a longer text (approximately 15 pages), which could be used to guide Member States in possible implementation measures.
After much discussion it was agreed that the aim should be to produce guidelines that could be used both for realistic rules for suppliers and education for users. The target should be one document that tells suppliers how to comply with key quality criteria and educates users as to what they ought to expect from a good health website. It was agreed that any document produced would highlight compliance with current guidelines, outline which EU directives, etc are relevant to this area, as well as relevant technical standards.
It was agreed that the key criteria should be made applicable to both passive information giving sites as well as sites that allow for transactions between service or information providers and users (i.e. information, products and services).
It was agreed that the longer document should outline in which ways the criteria may be implemented differently depending on the purpose of the site.
It was agreed that the working title of the documents should reflect the aim of the report and its possible uses. The following working title was agreed upon:
Good Practice Guidelines for the Health Internet.
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This page was last updated on 27/01/2010.
