The imperfect balance between investment and payback from presenting Cochrane reviews to lay people: the PartecipaSalute experience

Background: Raising awareness of Cochrane reviews is one of the main missions of Cochrane entities. Since 2003, the Italian Cochrane Centre (ICC) has participated in a national program to foster partnerships among consumers' associations and the medical community: the "PartecipaSalute" project. In particular, the ICC publishes abstracts and plain language summaries of pivotal Cochrane reviews in a dedicated section of the "PartecipaSalute" website (17,000 visits per month). Objectives: To explore the popularity of translations of abstracts and plain language summaries of Cochrane reviews on the PartecipaSalute website. Methods: In the first year a multidisciplinary panel selected Cochrane reviews according to the following priority criteria: relevance to clinicians and patients, disease prevalence and coverage of the topic by the national media. Abstracts and plain language summaries of 37 Cochrane reviews were translated and packaged together with the 14 relevant chapters of Clinical Evidence (also available into Italian). In the second year, with the support of a journalism agency, the website was thoroughly revised to increase usability, readability and graphic attractiveness. We monitored website visits during all periods. To explore how users perceive Cochrane reviews (i.e. usefulness and clarity) we translated a validated questionnaire used in a similar Canadian survey. We posted the questionnaire between February 2006 and April 2007. We invited a total of 250 consumers' representatives, drawn from a list of active associations, to visit our website section and to provide feedback. Furthermore we solicited our users to fill out the questionnaire with banners alongside Cochrane review website pages. All these activities cost approximately 25 000 (70% staff costs, 27% journalism agency, 3% secretarial services). Results: In 2006 an average of 15,300 visitors per month surfed through the "PartecipaSalute" website. In 2007 the average monthly visits rose to 20,250, increasing by 32%. During the same period, Cochrane reviews rose from less than 150 visits per month (1% of all traffic) to 900 (4.5%). Different degrees of attention were paid to other evidence based columns: in 2007 Clinical Evidence chapters almost doubled the number of Cochrane review visits, reaching 8% of all traffic. In one year only 44 responders filled out the feedback questionnaire. Conclusions: To interpret the results of this study different issues should be considered. Although the increase of Cochrane review visits is encouraging, the absolute number of visits to the Cochrane review section is low. To say if it is unacceptably low or not, is hard to judge, since we lack comparable data from similar dissemination interventions. The Partecipasalute website is rich with information and much of it has been packaged as raising-awareness material, designed to be more readable, accessible and simple. This may have hindered readers' access to the more complex and at times a cumbersome style of systematic reviews. Secondly, only recently have Italian consumers started to search for health information on the internet, since they usually refer to doctors as the main source of information. Thirdly, awareness that systematic reviews convey more trustworthy information than individual studies is still very limited even among health professionals. Finally, response rate to the evaluation questionnaire is very low. This result is not so surprising given that it was left to the visitors to answer the questionnaire or not without any positive incentives and with the burden of 49 questions: these may have been strong disincentives even for interested readers. Potential solutions to the above problems could be: i) to publish Cochrane reviews in several websites, in order to reach more visitors from different sources; ii) to create a Cochrane product ad hoc for Italian consumers attempting to reduce users distance from evidence based information sources; iii) to define a survey strategy to boost users' feedback