Sense About Science: Improving Access to Quality Scientific Information

How safe are MMR vaccines, really? Will the highway next to my house increase my risk of asthma? How much of climate change is attributable to human activity? All of these questions have major implications for key public policy decisions, and for citizens to answer them confidently, they need to be able to receive and understand well-founded scientific information.
It is precisely this challenge that brought us together for a recent installment of GovLab’s Ideas Lunch series, where Trevor Butterworth and Síle Lane discussed the British charitable trust Sense About Science and its brand new American branch, Sense About Sciene USA. Through their work on both sides of the Atlantic, they are committed to improving public discourse about — and understanding of — scientific research and its impact on society.
Butterworth and Lane made it clear that establishing higher standards for science communication and scientific research will only be possible if we raise expectations for both the “supply” and “demand” side of science, i.e. both the producers and purveyors of scientific knowledge and those who use such knowledge — or ought to — to make decisions. This central point led to a number of key takeaways related to both the supply and demand sides of the equation.

Supply Side

The “supply side” of science is multifaceted, and strengthening it requires holding purveyors of scientific information accountable by debunking baseless claims, helping science journalists report their stories more accurately, and holding legitimate researchers to higher standards of transparency and accuracy.

• Experts can help to shield citizens from potentially convincing pseudo-scientific claims. “Will this herb cure my cancer?” Will these magnets reverse my arthritis?“ Over the years, Sense About Science UK heard from colleagues in the disease advocacy community that more and more of their members were falling prey to — or at least seriously considering — a range of unproven treatments. In response, Sense About Science published “I’ve Got Nothing To Lose By Trying It,” a pamphlet explaining both the very real harms that unproven treatments can cause and the criteria that a doctor or scientist would use to evaluate a claim or treatment. The publication received wide press coverage and has been translated into multiple languages.

• Volunteer experts are willing and able to help journalists improve the accuracy of their stories, and journalists are eager to improve. Sense About Science USA, in partnership with the American Statistical Association, is now running STATS.org, a project to highlight the importance of statistics in research and improve statistical analysis in the media. STATS.org has just launched an advisory board composed of volunteer statisticians who will (1) help journalists check the accuracy of statistical claims in their stories and, more broadly, (2) train journalists in basic statistical literacy through workshops and collaborations with such groups as the National Press Foundation. These volunteers are able to work with journalists on a tight deadline to ensure that timely, readable science journalism does not come at the expense of accuracy.

• A combination of advocacy, policy incentives, and industry first-movers can lead to the spread of stronger transparency and data-sharing standards in scientific research. Unfortunately, about half of completed clinical trials have never published their full results, impeding our ability to learn from their data, incorporate it into future research, and use it to make sound decisions about treatments. In order to urge clinical researchers and their sponsors to be more transparent about their results, Sense About Science co-founded the AllTrials campaign, which seeks to secure commitments from the pharmaceutical industry, academic institutions, government bodies, and other research entities to publicly register all clinical trials, past and present, and to publish the results in full. The campaign has already won the backing of over 550 organizations worldwide, spanning the public, private, and philanthropic sectors. These include the UK’s Medical Research Council, the Royal Pharmacological Society, medical publisher Elsevier, and GlaxoSmithKline (GSK). Following their own commitment, GSK recruited almost a dozen pharmaceutical companies as partners in a joint private-sector offshoot of the campaign called Clinical Study Data Request, which allows researchers to gain approval to access the companies’ clinical study data. Hoping to build on these successes, the newly-launched Sense About Science USA will be leading the AllTrials campaign here in America. And on April 14 of this year, the campaign for trial transparency got a boost on a global level, as the World Health Organization joined the call for all clinical trials, past and future, to be registered and for their results to be made publicly available.

Demand Side

Better science and scientific communication won’t come about without citizens demanding it. As such, Sense About Science is also focused on the bolstering the “demand” side of the equation. As Butterworth explained, “Better science and better science journalism won’t happen without the public asking for evidence — this process has to be partly bottom-up.”

• There already exists strong public demand for evidence to back up ostensibly scientific claims. Sense About Science launched the Ask for Evidence campaign in 2011. When it began, Ask for Evidence 1.0 encouraged the public to send in postcards to ask for evidence to support public health advice, product advertising, news stories, or any other scientific claims they had heard. The recently launched Ask for Evidence 2.0 allows members of the public to submit similar requests for evidence electronically. Visitors to the website can also learn how to interpret the evidence they receive through a new online Help Center, either by browsing a compendium of information tailored by subject or by using the “Ask the Expert” function to pose more specific questions. Thousands of users have already gone to the Help Center to try to understand evidence they have received in support of a given claim.

• When the tools and experts are available to help the public hold such claims to a high standard of evidence, they do. Ask for Evidence 1.0 and 2.0 benefitted the public because Sense About Science matched the diversity of citizen queries to the specific scientific experts capable of providing answers. Over 9,000 volunteer experts now devote time to answering these questions from the public – from questions about the National Health Service’s advice to drink 1.2 liters of water a day to a company’s claims about its “detox” shampoo.

Underlying all of these initiatives is the fundamental belief that an informed public is essential for demanding that politicians, companies, journalists, and scientists themselves make accurate scientific claims based on sound evidence. This sort of public demand—with the right tools in place to give it voice —can in turn lead producers and purveyors of scientific knowledge to supply more evidence and better evidence. We share Sense About Science’s hope that their efforts to cultivate this virtuous circle of supply and demand will help scientific research deliver on its enormous potential to bring us better health, better products, and better public policy.