Engaging civil society with health research

The move to an open access model in contemporary health research raises questions about the role of the scientific journal and its engagement with civil society in shaping the research agenda, as well as highlighting tensions between the public interest in science and doing science that is in the public interest. If openness is seen as fundamental to the advancement of scientific discovery, a pay-to-view model of publishing militates against this. Publicly funding science implies a responsibility to share the results and benefits with the public who fund it. Health research, and its availability, is the foundation of the right to health in the World Health Organization Constitution. Erecting financial barriers can mean that health research is not available to those who need it most. The momentum towards free and open access publishing is making research literature available to the public but there are limitations, restrictions and exclusions. The assumption that all research will be directly funded at a high enough level to pay fees for article processing charges comes in at a time when science and healthcare budgets are under particular pressure. Even with open access, health research is not free, but a changing commodity in markets of publishing, journalism, the university sector, health services, pharmaceutical and medical device industries. Universities make economic and strategic decisions about which academic papers they should fund in an academic market focused on the competition of research assessment/excellence frameworks. Academics are assessed through what and where they publish. The imperative to publish is not necessarily the same as doing good science or pursuing the public interest. The introduction and widespread adoption of systematic review and meta-analytic methods to summarize research provides growing evidence that publication in peer-reviewed journals does not guarantee a study’s validity. The Cochrane Collaboration regularly excludes from evidence 50–75% of published studies because of poor design or reporting which undermines the trustworthiness of their conclusions. An appetite for new breakthroughs, despite the importance of null results for health care knowledge, leads to publication bias in favour of positive results, further fuelling expectations. Research is only really accessible if it is intelligible to the audiences who may benefit from it. But who actually reads journals? Where do people get their health information? Who are the contemporary popularizers of science and are these trustworthy and unbiased sources? While patients, their families and the public are a potential audience, information inequality maps on to growing health inequality globally and locally. Once a