European Science Editing 18 February 2013; 39(1)

• People are “participants” in research - http://www.ncbi. recruit people to and retain them in the research cohort. They
nlm.nih.gov/pmc/articles/PMC1115535/ quote Cooke and Kothari, who have shown that participation
• What’s in a name? Subjects, volunteers, participants and practices can be manipulative or have harmed those they are
activists in clinical research - http://lancaster.academia. intended to empower. Corrigan and Tutton propose using the
edu/RTutton/Papers/274951/Whats_In_a_Name_ terms “subject”, “participant”, or “patient activist” depending
Subjects_Volunteers_Participants_and_Activists_In_ on which term reflects the actual involvement of people being
Clinical_Research studied. “Subject” would be appropriate when all that the
• From the APA Style Publication Manual 2010 people did was to give informed consent, “participant” where
http://www.apastyle.org/learn/faqs/subjects-and- they have been involved in the design or use of the study, and
participants.aspx “patient activist” where the study was instigated and managed
by a patient group.
The first URL is a letter by Iain Chalmers, which
contributed to the debate in the BMJ. The APA Style manual Elise Langdon-Neuner (compiler)
is particularly unhelpful. It states that you should write [email protected]
about people in your study in a way that acknowledges
their participation but is also consistent with traditions in Discussion initiators
the field of study, adding that for more than 100 years the Jane Mayes: jane@janeruthven
term “subject” has been used in experimental psychology. Jaya Ramchandani: [email protected]
Corrigan and Tutton’s article starts by affirming that there has Aleksandra Golebiowska: [email protected]
been a shift away from the use of “research subject” in favour Marcin Kozak: [email protected]
of “research participant” in recent years. They list the bodies Andrew Davis: [email protected]
that have adopted “participant”: National Institutes of Health,
Medical Research Council, to which to my knowledge the References
National Bioethics Advisory Commission, Association for the 1 Peat J, Elliott E, Baur L, Keena V (2002) Scientific Writing Easy when you
Accreditation of Human Research Protection Programs, and know how. 3rd impression. BMJ Books, London
National Centre for the Dissemination of Disability Research 2 Oxley DK. Subjects or people? The Lancet 2001; 358:1463-1464
can be added. Corrigan and Tutton, however, are concerned 3 Herxheimer A. Pharmacovigilance on the turn? Adverse reactions
that although there have been initiatives to involve “subjects” methods in 2012. British Journal of General Practice August 2012;
more in research these might stem from researchers’ needs to 62:400-401

This Site I Like

The HONcode: How to judge the medical information on the web?
(http://www.hon.ch/HONcode/)

Thousands of websites offer health information. Of course make clear the sources used, and ensure that the information
not all these sites are reliable and up to date, and assessing presented is appropriate, independent, and timely. It must
the credibility of the publisher as well as the relevance and identify who is most likely to visit the site and ensure
accuracy of the information is not always simple. That’s why that the information presented is as comprehensible and
the Health On the Net Foundation (HON) – a non-profit, as easily accessible. Finally, relationships with possible
non-governmental organization, founded in 1995 under the sponsors should be clearly disclosed.
auspices of the Geneva Ministry of Health – issued in 1996 These aspects are summarized by the eight HONcode
the HONcode, the first code of practice for medical and principles, which are the following: 1. Authoritative (the
health online publishing. qualifications of authors of health information should be
The purpose of certification is to improve the quality indicated); 2. Complementarity (the mission and target
and transparency of Internet-based medical and health audience of the site have to be fully explained, and it should
information. Its mission is not only to help health consumers be clear that the websites aims at complementing and
identify quality sites, but also to bring about awareness not replacing the doctor–patient relationship); 3. Privacy
among site publishers, underlying the importance of specific (privacy and confidentiality of personal data submitted to
guidelines and mobilizing them around the certification the site by the visitor should be respected); 4. Attribution
process of their site. (the sources of the health information and the dates of
According to its website, the HONcode has been publication or last update on the pages should be provided);
translated into 35 languages, covering 72 countries, and is 5. Justifiability (the justifications for claims about the benefits
currently used by over 7300 certified websites. and disadvantages of products, treatments, or services have
to be disclosed); 6. Transparency (information should be
A question of principles accessible, with identification of the webmaster and the
To be considered reliable, a health-related website must availability of at least one contact address); 7. Financial
European Science Editing 19 February 2013; 39(1)

disclosure (ie sources of funding of the site); 8. Advertising How to apply

policy (advertising should be clearly distinguished from The HONcode is voluntary, which means that webmasters
editorial content). can apply for HONcode certification. The complete
Health websites often include collaborative and web 2.0 procedure is fully explained on the website (http://www.
elements, such as discussion forums, social networking, hon.ch/HONcode/HONcode_membership.html). The
wikis and blogs, and in general platforms or pages where application, free of charge, can be submitted by completing
the user can interact with other users or with the content. the HONcode questionnaire about the conformity of your
In medicine, these tools can be useful providing good website with the eight HONcode principles, then filling
information about specific diseases or disorders, but they the application form with general information about the
can also lead to misinformation; therefore assessing their website. Then the evaluation process starts (it can take up
reliability is very important. The HONcode Web 2.0 is an to 18 months). Each application is checked by a review
adaptation of the eight principles, which focuses on the committee, including medical and legal professionals,
special features and functionalities of web 2.0 platforms, for compliance with all eight principles. If the website is
taking into account the dynamic interaction between considered compliant, you can finally display the HONcode
internet users and developers. seal and associated text on your home page linked to your
The HON website also offers specialized medical search certificate. Sites displaying the foundation’s symbol are
engines: MedHunt for patients, HONsearch and HONselect generally considered credible sources of information. Since
for medical professionals, and HONcodeHunt to search the HONcode certification is a dynamic state, a certified
for HONcode certified websites. HON also provides site receives a check-up visit periodically, beginning one
two databases of trustworthy health information on eye year after the initial certification, and the certification is
diseases, Provisu.ch, accessible by those with poor or no extended every year according to site compliance.
vision through its variability of letter size and audio version,
and Santeromande.ch (in French), a directory of registered Silvia Maina
health professionals, hospitals, and medical associations. SEEd Medical Publishers, Torino, Italy
[email protected]