Information without barriers: Librarians as Support to Health related Information published in Social Media

According to an healthcare survey conducted by Bupa Health Pulse and supported by a report of the London School of Economics, 12.262 people from different countries get health information surfing the web.  At least 6 out of 10 interviewees declared to use Internet to get answers about health questions.  In pole position among questions that were asked, the survey found those about drugs (68% of  interviewees are Italians) or auto-medication and diagnosis while 39% of people usually asks advice or opinion about health to other patients online (blogs)(1).FDA provided direction on the use of digital communications in the pharma space(2). The European Union on the other hand prohibits direct-to-consumer advertising of prescription drugs and, therefore, European pharma companies have not been investing so much in digital communication on social media, contrary to the US.In Italy the law defines as advertising every information that may promote the prescription, sale or use of drugs(3).  Moreover, the Italian Health Department and the association of pharma companies(4) have recently sent out guidelines on information regarding over-the-counter drugs and Internet.  In Europe a debate is running  on a new directive regarding the information on prescription drugs to avoid that direct-to-consumer advertising increases the pharmaceutical expenditure (5).  New media present a culture clash, whose peculiar nature is a two-way interaction and content that it is easily portable and  sharable (6), aim to meet people’s need of health information. Nowadays Facebook and Twitter, the largest social media web sites, have more than 350 million users worldwide; there are about 168 millions blogs and the number of videos watched per day on YouTube are 2 billions (7).   A growing number of pharma-companies is testing the waters of social media such as  YouTube videos, Twitter, Facebook  and blog pages, even if - due to the added communication restriction imposed by the authorities and internal legal and regulatory department (8) (9) - Social Media use in the pharmaceutical industry can be significantly more complex than in other industries (10).It is well-known that many web applications allow users to customize, personalize and even do mashpus of information as they share it within their online communities(6). These lead to a more complicated situation for pharma companies because, in addition to authority’s rules, a new Facebook policy will require all them to leave wall messages or comments enabled on their Facebook pages. Moreover Google, with its “Sidewiki” application, can layer a social network of commentary onto any existing static Web site, with or without the site owner’s consent (7).Therefore, this leaves pharma-companies open to public criticism and also complicates federal rules requiring companies to report all stated drug side effects to authorities, a rule set in 1993, long before the social media advent (11).  Such situations create the risk of taking the original information out of context or even changing meaning entirely (6) and, in addition, of losing control over the content of the message.  Legal and regulatory uncertainties are important concerns when it comes to pharmaceutical participation in social networking (3) and it will be necessary to draw a line dividing a pharma company own media (company web side or company chat area) from other online resources about a disease or drugs(7).  Social media is about people connecting with people, it’s about sharing information and making connects, it’s about building a network of people who share resources around common topics of interest. The general audience is looking at pharmaceutical companies to be a resource of scientific information (10): thus, some pharma companies have health related social media applications to connect people with the same disease experience (3). It’s important for companies to develop their own guidelines for online content monitoring and communication based on standards for other promotional channels, including what constitutes a reportable adverse event. Having a formal plan on how to monitor, seek out, and respond to the conversations of online consumers can help manage risk and give employees the proper frame (3).

The Gruppo Italiano Documentalisti Industria Farmaceutica e Istituti di Ricerca Biomedica (Gidif.Rbm) - an Italian non-profit association of Librarians and Information Professionals in the Biomedical Research field, funded in 1983 in Milan - has organized a working group to explore communication through social media, to compare the different applications of these new tools in different fields and to discuss how health librarians can contribute to this new task. For this reason our acronym can be read as Good Information Dissemination without Frontiers. The difficulty to translate information without running afoul of legal and marketing restriction rules and the very nature of pharmaceutical communications that is highly controlled and vetted, needs quality peer review.  We think that librarians should be asked to participate in this process and give support not only - as usual - in evaluating the information choice (quality, updating, authoritativeness etc.) but also to be creative with entrepreneurial spirit.  Health librarians are used to work in an information field with strict rules providing results and references to scientists. In the future they need to transform the same quality and authoritative scientific information in a much more concise, friendly, and appealing-to-spread (to lay people) information and news.  In particular Librarians should collaborate and cooperate with the Communication Departments supporting them to issue clear scientific and referenced health related contents for consumers.  Another topic is to exploit the librarian capability and competences to create ontologies in order to classify information on diseases and therapies to allow consumers a rapid and easy comprehension of health-information and a friendly use of social media.Librarians can help also to promote the usefulness and convenience of web 2.0 among the pharma company staff informing them on the power of the new tools (12).