EURORDIS Quality Guidelines for health websites

EURORDIS Quality Guidelines for health websites are designed to select resources which may help patients and families affected by rare diseases find validated, relevant and useful medical information. 

The resources included in the gateway provided by EURORDIS should meet the following quality guidelines.

Credibility

Transparency of the information source

The information source, as well as the references of the organisation or qualifications of the health professionals responsible for the website, should be clearly disclosed. The actual address of the organisation, an e-mail address, and the logo, if any, are also displayed.

Transparency of the funding sources

The different funding sources must be indicated. It is clearly specified that under no circumstances they can influence the information produced or cited.

Information on a drug or a health product should be as complete as possible, and independent from any conflict of interest.

Any advertisement or commercial information is clearly indicated as such, and under no circumstances should interfere with the editorial content.

Quality of the content

Expertise of the authors

The authors of an original content must provide credentials, qualifications and affiliations. The texts needing a specific expertise, as for rare diseases, should be written by authors who have experience with these conditions.

Science-based content

An original content must rely on scientific data, validated and supported by the bibliographic citations allowing to check them.

Reference to the original source

The duplication or citation of original documents should refer to their sources and authors, and must respect intellectual property rights.

Validation of the information

Before publication, any medical information should be reviewed by an editorial board to check its accuracy and reliance on the current state of the research.

Rare disease information should be validated by the experts for each specific domain.

The procedures for management and validation of the information are clearly displayed and systematically used for the internal quality control of the website.

Update of the information

The website should indicate the date of publication for all medical information. The latest update should also be displayed even if the information has not changed to ensure that it has been reviewed.

Information updates are performed on a regular basis, according to the specifications included in the website's procedures.

A purpose limited to information

The website should clearly inform its users that any medical content is provided for information purposes only, and that it should not replace or delay medical advice from a health professional.

Relevance of the information

The website should provide relevant and useful information, corresponding to the defined purpose, its targeted public, and adapted to users' needs.

 

Quality and usability of hyperlinks

An organised content

The site should be "user-friendly" and organised in a way that facilitates the navigation to the different sections.

Selection of the hyperlinks

As links to different external information sources engage the responsibility of the website, they should be selected according to predefined criteria to assure the credibility, quality and usefulness of content.

Updating the hyperlinks

The usability of external and internal hyperlinks should be ensured.

Accessibility

The site should be designed to be accessible to people with disabilities.

Rules for online contacts

In addition, specific rules apply to websites which propose tools and services open for comments by the users, e.g. blogs, or which make possible online debate between patients and other users - discussion forums, social media or community online discussions.

Moderating procedures, supported by a Charter of Good Practice, should be installed to avoid conflicts and to ensure that users abide by the laws and regulations.

Confidentiality of data

The websites cannot maintain the personal data of users except for specific purposes such as their participation in an online patient community. The users should be informed of this in advance and accept the conditions.

The websites must ensure that all the necessary security measures are put in place to guarantee the protection and confidentiality of the data, and inform the persons concerned of their rights.

The processing, sharing or transfer of personal data must be subject to prior consent by the persons concerned.

 

 

Page created: 17/05/2013
Page last updated: 07/11/2013
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases