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Download Our Annual Review 2018-19 ANNUAL REVIEW 2018/19 Because evidence matters A MESSAGE FROM OUR DIRECTOR “We held the first ever Evidence Week in the UK parliament, opened by community groups from across the country. They joined researchers to brief members of parliament on the evidence relevant to planned policy changes.” EVIDENCE MATTERS, AND WE SHOULD ASK FOR IT, MAKE SENSE OF IT AND EXPECT DECISION MAKERS TO BE ACCOUNTABLE FOR IT. Evidence, in the form of research results, statistics parliaments now want to take this on and we and reasoning, is not some esoteric concern. It is will be working with them over the next year the currency of public life and accountability. to make that happen. We have seen similar international demand for our Transparency Sense about Science’s purpose is to promote of Evidence framework, which pushes government the public interest in sound science and evidence. departments to make available the evidence These are demanding times — equipping behind government proposals. communities, encouraging researchers and pushing bodies that would rather ignore Our Voice of Young Science network — early the evidence to engage with it — and in the career researchers who want to train themselves 12-month round up that follows you will see and help each other to participate in public just how much its realisation depends on the discussion about research — has appeared involvement of different communities and research in new cities around Europe. The Maddox prize, partners, donors and people with a sense of public which we award with Nature in the autumn, service. With their commitment, systems and now includes an early career award. practices in important institutions are changing. We have long argued that national statistics Our AllTrials campaign, supported by tens are public goods. And while governments around of thousands of patients and doctors the world announce data strategies, we have been internationally, is now identifying specific asking: where is the effort to make sure the quality companies and universities whose clinical trial matches the claims? How accountable are results are missing, and the rule changes we have decisions based on data science? secured in Europe and North America have seen To each and every one of you who has given us the the numbers of reported trials rising rapidly. insight, time, funds, expertise and energy necessary We held the first ever Evidence Week in the UK to make such an impact in 12 months, thank you. parliament, opened by community groups from across the country. They joined researchers to brief members of parliament on the evidence Tracey Brown OBE relevant to planned policy changes. Other Director, Sense about Science ALGORITHMS IN EVIDENCE AND THE EU DECISION MAKING CO-CREATING A CITIZEN AND RESEARCHER LED MANDATE FOR MEPS. REPORT RELEASED BY HOUSE OF COMMONS SCIENCE AND TECHNOLOGY COMMITTEE. Concerns about post-truth thinking are particularly acute in the EU setting, where the relationships between policymakers, researchers, politicians and the public are relatively new and fragile. To set a more compelling and unified agenda, researchers APRIL / MAY and citizens need to find common purpose in pressing decision makers to improve their use of evidence, and for representatives in the European Parliament to scrutinise evidence effectively. The case for this inquiry was put to the committee Our Evidence Matters project is bringing together by our policy manager Dr Stephanie Mathisen, citizens and researchers to co-create a mandate who raised the question of “the extent to which — a set of expectations — for what they want MEPs algorithms can exacerbate or reduce biases” as well to do with evidence when making and shaping as “the need for decisions made by algorithms to be policy. This initiative was launched following our challenged, understood and regulated”. Her call for event in European Parliament in 2017 led by 100 investigation into this area was timely; since the citizens from different walks of life. launch of the inquiry, we have witnessed growing public concern about the lack of standards in data In 2018-19 we launched the project, first by securing science and use of algorithms. The report’s findings partners. Early 2019 saw a series of flagship offer a fascinating insight into this area, which workshops hosted by our leading partners Science clearly demands further scrutiny. To read it please Foundation Ireland and Luxembourg’s National visit www.parliament.uk where you can download Research Fund, with smaller workshops planned the PDF. across the EU in the future. FIRST EVER ‘EVIDENCE WEEK’ EXPLORING EVIDENCE IN POLICYMAKING IN UK PARLIAMENT. “I believe that statistics and other evidence tell us how the world is working — or not — and therefore enable us, as engineers, as politicians, Photographs by James Hopkirk as scientists, as lobbyists, as campaigners: they enable us to make the world work better.” Chi Onwurah, MP for Newcastle upon Tyne Central & Shadow Minister for Industrial Strategy JUNE From 25 - 28 June 2018, MPs joined with exhibits and acted as a hosting point for MPs to meet communities and researchers to explore their constituents. how to use scientific evidence and statistics Community groups came from all over the UK to open to support effective scrutiny and policy. Evidence Week for assembled MPs in the Churchill The first of its kind, Evidence Week was an Room. Their interests ranged from beekeeping to initiative of Sense about Science, the House community action to IVF and they made clear their of Commons Library, Parliamentary Office expectations that Parliament should engage with of Science and Technology and Commons evidence. They were met by more than 40 MPs Science and Technology Committee, and held and peers. Norman Lamb, chair of the Commons in partnership with SAGE Publishing. Science and Technology Committee (pictured Evidence Week offered events and briefings opposite), listened to every single statement. for MPs, produced in collaboration with community Evidence Week ended with a roundtable about organisations, research and regulatory bodies. whether research is looking at what society needs Throughout the week, a custom-made stand to know, which SAGE published as a discussion in the Upper Waiting Hall featured interactive paper later in the year. Norman Lamb greeting community groups at Evidence Week EUROSCIENCE OPEN FORUM 2018 TAKING PUBLIC ENGAGEMENT, BIG DATA CHALLENGES, ALLTRIALS, AND POLICY AND EVIDENCE TO EUROPE’S LARGEST INTERDISCIPLINARY SCIENCE MEETING. JULY / AUGUST At ESOF 2018 we led discussions on science Our director set out the urgent need for a public guide to data communication; public engagement in research; science, which saw welcome offers of help from the International the AllTrials campaign for clinical trial transparency; Network of Government Science Advisers (INGSA) and Elsevier. big data and the future of democracy; and scientists’ We also led a brainstorming session with early career roles in a ‘post-trust world’. researchers (ECRs) about the challenges they face when We hosted a lively session for early career it comes to getting involved in public discussions about science researchers on how to get their voices heard and evidence. At this session, the ECRs shared their experiences in EU policy discussions with a panel of experts of trying to engage with policymakers both at a national from leading European research organisations, the and EU level; they told us there is a huge need for more support EC’s Joint Research Centre, the EU’s Science Advice to engage with national and EU policymakers, with only a few Mechanism and the Voice of Young Science network. universities and research councils provide training opportunities. ALLTRIALS CAMPAIGN HIGHLIGHTS NON-COMPLIANCE EU TRIALS TRACKER SHOWS ALMOST HALF OF CLINICAL TRIALS FAILING TO REPORT RESULTS. “This problem strikes to the heart of evidence based medicine. We cannot make 49% OF EUROPEAN informed choices about CLINICAL TRIALS which treatments work best, IN EUROPE FAIL TO as doctors and patients, REPORT RESULTS 12 unless all results are reported.” MONTHS AFTER THE END OF THE TRIAL Dr Ben Goldacre SEPTEMBER 2018 SEPTEMBER It has been another strong year for AllTrials, six months they would be called before the our campaign to get the results of all clinical Committee. In summer 2019, AllTrials will advise trials reported. the Committee on which institutes to call in for non- compliance. In parallel, we produced a step by step EU rules now mandate that all trials on the EU’s guide for researchers and research organisations register of clinical trials must report results onto on how to upload results and update information the register within a year of their end. The EU on clinical trial register entries. These were shared TrialsTracker, launched by the campaign in with every UK university and NHS Trust. September 2018, shows which have reported and which have not. At its launch around half The UK Government is committed to developing of EU trials had not reported results (49%). a wide-ranging strategy on clinical trials European academic institutes are lagging far transparency in the UK and asked the Health behind companies in complying with the rules Research Authority (HRA) to develop this; AllTrials — with 68% of company-sponsored trials reporting co-founder Dr Síle Lane has been invited to join results, but only 11% of academic trials (as of the group writing this new strategy. September 2018). The EUTrialsTracker is being Big news in the USA this year also: in October used by groups around Europe, including student 2018 the FDA, in response to pressure from associations and pharma company shareholders, AllTrials and others, published for consultation to press institutes and companies to clean its plan to identify and punish the organisations up their past trials reporting records. and people who have broken the law by not In the UK, the AllTrials team worked with the reporting clinical trial results.
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