tag:theconversation.com,2011:/us/topics/research-dissemination-45665/articlesResearch dissemination – The Conversation2021-06-24T12:11:27Ztag:theconversation.com,2011:article/1568972021-06-24T12:11:27Z2021-06-24T12:11:27ZThe behind-the-scenes people and organizations connecting science and decision-making<figure><img src="https://images.theconversation.com/files/406535/original/file-20210615-25-1n8zgkp.jpg?ixlib=rb-1.1.0&rect=0%2C7%2C5125%2C3398&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Listening to science is a lot easier for politicians when behind-the-scenes intermediaries are there to help.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/businesspeople-shaking-hands-at-conference-table-royalty-free-image/530281555">Morsa Images/DigitalVision via Getty Images</a></span></figcaption></figure><p>The role of science in society has never been more important. Scientific perspectives are critical for understanding complex issues such as the COVID-19 pandemic, climate change, access to higher education and systemic racism. </p>
<p>The Biden administration promises to “<a href="https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-protecting-public-health-and-environment-and-restoring-science-to-tackle-climate-crisis/">listen to the science</a>” and “<a href="https://apnews.com/article/election-2020-joe-biden-religion-technology-race-and-ethnicity-2b961c70bc72c2516046bffd378e95de">marshal the forces of science</a>.” </p>
<p>But how does scientific information actually make its way from researcher to policymaker? <a href="https://scholar.google.com/citations?hl=en&user=u4Er1EkAAAAJ">We</a> <a href="https://scholar.google.com/citations?hl=en&user=kcD2PeYAAAAJ">study</a> the <a href="https://doi.org/10.1332/174426420X16083745764324">individuals and organizations that serve as intermediaries</a> between these two worlds. After reviewing hundreds of cases, we found intermediaries not only help translate science but often facilitate two-way relationships between scientists and policymakers.</p>
<h2>Getting knowledge to policymakers</h2>
<p>Intermediaries are funded through many sources. They can be based at <a href="https://doi.org/10.1007/s11625-015-0314-8">universities</a>, <a href="https://doi.org/10.1093/scipol/scv008">nonprofit organizations</a> or in <a href="https://data.globalchange.gov/report/noaaogp-connecting-2002">government</a>. Intermediaries have always existed. However, scientists, policymakers and funders are increasingly recognizing their value – and the need to <a href="https://doi.org/10.1332/174426409X463811">professionalize their role</a>. </p>
<p>Sometimes individuals or organizations naturally broker information between scientists and policymakers, even though it may not be a stated part of their job. </p>
<p>In Michigan, county-level <a href="https://www.mackinac.org/2709">intermediate school districts</a> are governmental entities that provide administrative and instructional resources to local school districts. These administrative bodies know a lot about the school districts they serve and often function as intermediaries between local districts and researchers. For example, one intermediate school district <a href="https://doi.org/10.1007/s10464-015-9745-8">recently provided information about a research-based literacy program</a> to help a local school district make a curriculum decision.</p>
<p>Other times, intermediaries are hired as part of a project or within an organization. While a researcher can always play this role, it helps to have staff dedicated to connecting science to decision-makers. Building relationships that last takes time – and academia often doesn’t reward researchers for engaging with policy. </p>
<p>The Gund Institute for Environment at the University of Vermont has employed <a href="https://scholar.google.com/citations?user=u4Er1EkAAAAJ&hl=en">one of us</a> as an intermediary for the past two years. The behind-the-scenes work has included tasks such as arranging for scientists to testify to legislative committees and facilitating meetings between researchers and leaders of relevant federal programs.</p>
<p>The work of intermediaries can have real-world impacts on timely issues, from <a href="https://www.uvm.edu/cals/nfs/food-insecurity-impact-covid-19">food insecurity related to COVID-19</a> to <a href="https://www.uvm.edu/gund/news/vermont-pay-farmers-tackling-phosphorus">water quality initiatives</a> to <a href="https://doi.org/10.1177/0895904813514132">charter school policies</a>.</p>
<h2>Two-way communication</h2>
<p>Ideally, intermediaries help information to flow in both directions between scientists and policymakers. </p>
<p>For example, they may help scientists translate research about projected shifts in rainfall patterns to policymakers who need to manage a community’s limited water supply. At the same time, intermediaries may share with scientists information about the water infrastructure decisions facing policymakers. This exchange helps policymakers make informed decisions – and helps scientists produce research that addresses real-world questions and problems.</p>
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<span class="caption">Bridging the worlds of science and policy-making can be a full-time job.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/the-curve-of-suspension-bridge-high-way-royalty-free-image/950831036">Jung Getty/Moment via Getty Images</a></span>
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<p>But the flow of information is rarely linear or orderly. Intermediaries need to continuously create dynamic conversations in order to generate responsive, two-way communication. </p>
<p>Fortunately, scientists, policymakers and funders have exhibited increased interest in this work, by creating opportunities to <a href="https://www.dayoneproject.org/post/improving-science-advice-for-executive-branch-decision-making">improve science advice in government</a> or use <a href="https://rpp.wtgrantfoundation.org/">research-practice partnerships</a> in education. Such efforts enable intermediaries to facilitate ongoing two-way communication, build common ground and maintain relationships.</p>
<p>[<em>Understand new developments in science, health and technology, each week.</em> <a href="https://theconversation.com/us/newsletters/science-editors-picks-71/?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=science-understand">Subscribe to The Conversation’s science newsletter</a>.]</p>
<h2>Trust is a key ingredient</h2>
<p>One of the most important functions intermediaries play is to build and maintain relationships between people, in the process helping scientists become trusted sources of new ideas.</p>
<p><a href="https://doi.org/10.1016/j.envsci.2021.05.020">Trust is central</a> to whether decision-makers use research evidence. While scientific credibility is important, people’s <a href="https://doi.org/10.1073/pnas.1502452113">relationship with the knowledge</a> also affects whether they decide to use it. Does a decision-maker trust the evidence? How do other pieces of information or misinformation compete with scientific evidence? And is the evidence <a href="https://researchschool.org.uk/huntington/news/what-makes-research-evidence-useful-for-teachers">easy to understand and compatible with the decision-makers’ values</a>?</p>
<p>The reality is, even when decision-makers trust and pay attention to science, it is only one factor among many that informs policy. </p>
<p>During the <a href="https://www.npr.org/2021/02/12/967033554/cdc-offers-clearest-guidance-yet-for-reopening-schools">debates about reopening schools</a> during the COVID-19 pandemic, the <a href="https://doi.org/10.1001/jama.2021.0374">evidence on viral spread in schools was incomplete</a>. People questioned health experts and elected officials. Intermediaries brokered information on both sides of the debate, yet many competing factors, conflicting values and political interests swayed decisions.</p>
<p>Science alone doesn’t always show the best path forward. Public leaders still need to make decisions based on <a href="https://slate.com/technology/2020/03/coronavirus-pandemic-science-politics-values-convergence.html">value judgments</a> and what citizens care about. Even when people do agree about scientific facts, <a href="https://doi.org/10.1126/science.abf8762">conflicting values</a> can lead to disagreement and inaction. </p>
<p>But science intermediaries can help introduce options, expand the range of choices being considered and ensure research evidence is a part of policy debates.</p><img src="https://counter.theconversation.com/content/156897/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>In the past, Jennifer Watling Neal has received grant funding from the National Institute of Mental Health and the W.T. Grant Foundation for work that she has conducted on the use of scientific evidence in education.</span></em></p><p class="fine-print"><em><span>Stephen Posner does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Before new policy can be based on evidence, decision-makers need to understand the relevant research. Intermediaries between scientists and policymakers translate information and build relationships.Stephen Posner, Director of Policy, University of VermontJennifer Watling Neal, Associate Professor of Psychology, Michigan State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1221022019-09-22T13:49:21Z2019-09-22T13:49:21ZCommunicating science online increases interest, engagement and access to funds<figure><img src="https://images.theconversation.com/files/291308/original/file-20190906-175696-1f1wlnt.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5000%2C3200&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The internet has changed the way scientists communicate with their funders, the public and each other.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Twitter, Instagram, Facebook and other social media platforms are sometimes dismissed as distractions for students. But they’re also avenues for scientific communication. </p>
<p>Scientists are active on social media, discussing everything from methods to the latest developments in research. They even use social media to raise funds. Scientists sometimes provide mentoring online and have conversations with more junior researchers about their careers. Social networking tools also provide a space to build both social and professional networks, allowing scientists to develop new collaborations.</p>
<p>Dismissing online science communication as trivial to the <a href="https://doi.org/10.1038/s41556-018-0253-6">intellectual work of scientists</a> would be a mistaken position.</p>
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<h2>Crowdfunding research</h2>
<p>Crowdfunding platforms, such as <a href="https://experiment.com/">Experiment</a>, allow everyday people to fund scientific research and include features similar to those found in traditional grant proposals. Crowdfunding proposals, however, also include features of social media, such as biographies explaining not only credentials, but personal interests and passions.</p>
<p>As public funding becomes increasingly <a href="https://www.theatlantic.com/ideas/archive/2019/09/problem-sugar-daddy-science/598231/">difficult to secure</a>, some scientists are <a href="https://doi.org/10.1145/2675133.2675188">looking to alternative venues</a>. However, crowdfunding also illustrates how problems arise online, too. </p>
<p>Questions about ensuring accountability, managing ethics and regulating funds need to be considered. Further, although crowdfunding can be useful for those starting out, the levels of funding cannot compete well with publicly funded research support. </p>
<p>Crowdfunding may also rely on already powerful social networks, which is something that is not available to everyone, and can further reinforce barriers. Acknowledging how access to platforms can be reliant upon one’s social and professional connections rather than their science is important. </p>
<p>Crowdfunding isn’t the only funding mechanism that faces such questions. Public funding and private funding is subject to questions of accountability, ethics and regulations. </p>
<h2>Public forum</h2>
<p>Online science communication is not only for popularizing science, but an important space to address serious problems within science, too. </p>
<p>High-profile <a href="https://www.buzzfeednews.com/article/peteraldhous/jeffrey-epstein-science-donations-apologies-statements">scientists and science popularizers</a> have been revealed to have been supported by financier and convicted sex offender Jeffrey Epstein. Researchers at the <a href="https://www.newyorker.com/news/news-desk/how-an-elite-university-research-center-concealed-its-relationship-with-jeffrey-epstein">Massachussetts Institute of Technology</a> and Harvard University received funding from Epstein. Others benefited from his <a href="https://newrepublic.com/article/154826/jeffrey-epsteins-intellectual-enabler">connections to publishers</a> for book deals. </p>
<p>Details continue to emerge, but it’s clear at this point scientists and science communicators have <a href="https://www.wired.com/story/jeffrey-epstein-and-the-power-of-networks">benefited from private funding implicated in the exploitation of children</a>. At the moment, <a href="https://twitter.com/phylogenomics/status/1170211003310596097">scientists</a> and <a href="https://twitter.com/xeni/status/1170352857952002048">journalists</a> are calling out this unethical behaviour, notably on Twitter, and <a href="https://www.theguardian.com/commentisfree/2019/aug/27/jeffrey-epstein-science-mit-brockman">calling for changes</a> to how powerful networks in science operate.</p>
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<p>Because the ways we communicate about science tell us about the broader culture of science, expectations for scientific conduct, ethics and norms, it’s important to examine these new forms of communication. </p>
<h2>Communicating science online</h2>
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<a href="https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=900&fit=crop&dpr=1 600w, https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=900&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=900&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1131&fit=crop&dpr=1 754w, https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1131&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/291306/original/file-20190906-175686-1gor69c.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1131&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">The book examines how the internet is changing how science is communicated.</span>
<span class="attribution"><a class="source" href="https://ohiostatepress.org/books/titles/9780814213988.html">Cover from the Ohio State University Press.</a></span>
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<p>In my new book, <a href="https://ohiostatepress.org/books/titles/9780814213988.html"><em>Science Communication Online</em></a>, I explore how online science communication is changing how we communicate about science (<a href="https://kb.osu.edu/bitstream/handle/1811/87159/MEHLENBACHER_final_KU_190pp.pdf">the book is available for free download</a>). I also examine what changes to science communication online tell us about broader changes to where science fits in the public life.</p>
<p>Examining different <a href="https://doi.org/10.1080/00335638409383686">genres of communication</a> allows us to understand how different forms of science communication accomplish different goals. For example, the <a href="https://wac.colostate.edu/books/landmarks/bazerman-shaping/">scientific research articles</a> are structured and used quite differently from a newspaper article reporting the results of a study. When looking at online forms of communication, a number of new genres have emerged, allowing scientists and science communicators to achieve a wider range of communication goals. These can incorporate characteristics of a research article combined with accessible language or visuals to reach a <a href="https://doi.org/10.1177%2F0741088386003003001">broader audience</a>.</p>
<p>Blogs are one example of this. Some communicate more <a href="https://blogs.plos.org/synbio/2019/09/02/building-a-co2-concentrating-mechanism/">technical information</a>, others discuss <a href="https://blogs.plos.org/synbio/2019/08/01/reflections-on-seed-2019/">events</a> and still others discuss matters pertinent to <a href="https://blogs.plos.org/synbio/2019/08/05/paradigm-shifts-in-life-science-education-opportunities-and-challenges-in-an-era-of-synthetic-biology/">scientist training</a>. Other blog posts help explain <a href="https://blogs.plos.org/neuro/2018/09/29/neuroscience-at-scale-synaptomics-tries-to-make-sense-of-the-brain-at-a-stupefying-scale-by-samuel-rose/">complex science to the public</a>.</p>
<h2>A future for online science communication</h2>
<p>Science communication online is dynamic. Understanding the new ways we can communicate about science requires immersion in the conversation.</p>
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Read more:
<a href="https://theconversation.com/citizen-science-can-help-solve-our-data-crisis-112669">Citizen science can help solve our data crisis</a>
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<p>That conversation isn’t just for scientists. Online spaces, too, can serve broader purposes. Consider the news aggregate website Reddit’s “Ask Me Anything” series, where scientists regularly answer questions about their work. University of Waterloo doctoral researcher <a href="http://devonmoriarty.com/">Devon Moriarty</a>, a colleague of mine in rhetorical studies, has found that in such spaces, people have <a href="https://doi.org/10.1080/02691728.2019.1637964">sophisticated criteria for assessing a scientific expert’s credibility</a>. Online science communication allows for more of dialogue between scientists and those interested in their work.</p>
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<a href="https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/291309/original/file-20190906-175673-wyx8nu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">To communicate their research and findings to a wide audience, scientists need to be aware of the ways in which people seek and access information online.</span>
<span class="attribution"><span class="source">Shutterstock</span></span>
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<p>Science enthusiasts can look to online spaces to learn more about scientific subjects, the process of science, vetting scientific claims, learning about the scientists themselves, and even <a href="https://scistarter.org/">participating in scientific research</a>.</p>
<p>[ <em>You’re smart and curious about the world. So are The Conversation’s authors and editors.</em> <a href="https://theconversation.com/ca/newsletters?utm_source=TCCA&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=youresmart">You can read us daily by subscribing to our newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/122102/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ashley Rose Mehlenbacher receives funding from the Ontario Ministry of Research, Innovation and Science’s Early Research Award program and the Social Science and Humanities Research Council of Canada Insight Grant program. She is also the President of the Association for the Rhetoric of Science, Technology, and Medicine. Views expressed are those of the author.</span></em></p>Science communication online is important to the intellectual work of scientists.Ashley Rose Mehlenbacher, Assistant Professor, University of WaterlooLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1164692019-05-09T14:32:37Z2019-05-09T14:32:37ZSouth African research output has risen, but caution must temper celebration<figure><img src="https://images.theconversation.com/files/273542/original/file-20190509-183103-1r6arn6.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Publish or perish?</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>Each year, <a href="https://www.natureindex.com/">Nature</a>, a research output database, publishes its index of high-quality research outputs across a range of journals within the natural sciences. Topics range from climate change to human biology. The data on the index represent output by institution, by country and by extent of collaboration. </p>
<p>In 2018, only one African country featured in the top 50: South Africa, <a href="https://www.natureindex.com/annual-tables/2018/country/all">coming in at 38</a>. It was at 39 on the 2017 list. The improvement is a result of fractional count, which is used to allow for multiple authors from various institutions and countries collaborating on a single publication. Simply put, this means that more South African authors published research in the 2017 to 2018 period, and they did so in collaboration with researchers from other countries.</p>
<p>The Nature Index is far from exhaustive. It doesn’t capture research outputs in, for instance, humanities or social sciences. </p>
<p>Another recently released <a href="http://research.assaf.org.za/handle/20.500.11911/114">publication</a> by the Academy of Science of South Africa suggests that increased research production should be celebrated – with caution. </p>
<p>The Academy of Science of South Africa’s report includes much detail about where and how the country’s research community has increased its number of publications, citations and collaborations. But it also raises concerns that sometimes, quantity comes at the cost of <a href="https://theconversation.com/how-to-approach-the-revolution-in-scholarly-publishing-116091">quality</a>. In some cases increased publication counts have not served the desired end: to spread knowledge at the frontiers of a field.</p>
<h2>Quality costs</h2>
<p>Universities around the world are increasingly positioned as competitive businesses. This often results in academics being judged on the basis of various factors that are used to measure productivity and efficiency.</p>
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Read more:
<a href="https://theconversation.com/competition-as-a-fetish-why-universities-need-to-escape-the-trap-58084">Competition as a fetish: why universities need to escape the trap</a>
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<p>Publication counts may well be the most commonly used such metric. For example, publication metrics dominate in <a href="https://theconversation.com/south-african-universities-shouldnt-be-playing-the-global-rankings-game-105221">the formula</a> that’s used to develop university ranking systems. </p>
<p>But all factors are partial in their representation of what’s being measured – they cannot tell the full story of what’s being produced and what value it adds to a field of study.</p>
<p>The contributions that universities make to our understanding of the world is mainly built bit by bit, over time, as teams of researchers contribute some small new understanding. Disseminating these small contributions to all those working in the field is crucial to such incremental knowledge development. And academic publications are the key way to disseminate knowledge.</p>
<p>But publication is not the goal – it’s just the means. The goal is knowledge dissemination. This distinction is crucial but sadly poorly grasped. It is the blind drive for publications at all costs that leads to <a href="https://theconversation.com/why-developing-countries-are-particularly-vulnerable-to-predatory-journals-86704">predatory publications</a>. </p>
<p>As the Academy of Science of South Africa report reveals, South Africa’s Department of Higher Education and Training has battled to monitor the rise of the predatory publication. The country has seen a steep increase in <a href="http://research.assaf.org.za/handle/20.500.11911/114">dodgy articles</a>. In South Africa, publications are awarded funding in the institutional block grant. While the department currently uses six <a href="http://assafjournalblog.org.za/dhet-lists/">international and national lists of journals</a> to vet which articles should be subsidised, a number of publications of dubious merit slip through the system. </p>
<p>The Academy of Science of South Africa <a href="http://research.assaf.org.za/handle/20.500.11911/114">suggests</a> that between R100 million and R300 million has been paid to universities by the state for predatory publications that by their very nature fail to meet the central goal of knowledge dissemination. This amount is in the form of subsidies that the Department of Higher Education and Training pays to universities for research publications.</p>
<p>In times of financial constraint, it’s not surprising that South African universities are pressuring their academic staff to publish and subsequently to increase institutional subsidies. But sadly some of the methods used by universities to drive productivity, such as incentives paid to individual researchers for their publications, have led to <a href="http://research.assaf.org.za/bitstream/handle/20.500.11911/114/2019_assaf_twelve_years_later_report_appendix1.pdf?sequence=5&isAllowed=y">insidious examples</a> of misconduct by both authors and some local journals. </p>
<p>In some cases, <a href="https://theconversation.com/incentives-for-academics-can-have-unintended-negative-consequences-78408">institutional practices</a> seem to actively contribute to problematic practices evidenced in the very uneven distribution of predatory publications across the sector.</p>
<h2>In conclusion</h2>
<p>It is not all doom and gloom. Both the Academy of Science of South Africa report and the Nature Index demonstrate the great successes South Africa has had in building its research productivity. This should be celebrated. But we need to keep a careful eye on the flaws in the system that drive output for personal gain over research dissemination for knowledge building. </p>
<p>Universities need to look carefully at the message they’re giving through their incentive and promotion systems. In many cases the message is that publication is the goal to which academics are meant to aspire, and the prize is individual recognition and reward.</p><img src="https://counter.theconversation.com/content/116469/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sioux McKenna does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>South Africa is ahead of the pack when it comes to research output in Africa. But this ranking is not a celebration.Sioux McKenna, Director of Centre for Postgraduate Studies, Rhodes UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/852432017-11-08T23:43:57Z2017-11-08T23:43:57ZDesign lab connects autism families with research<figure><img src="https://images.theconversation.com/files/192496/original/file-20171030-18686-1ntcb3d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Approximately 87,000 children in Canada are affected by autism. A new web platform promises to help their families access much-needed research knowledge. </span> <span class="attribution"><span class="license">Author provided</span></span></figcaption></figure><p>Sitting in a circle, a group of researchers and caregivers of people with autism spectrum disorder weave blue and orange yarn around a circular peg board. One parent describes the challenges she faces in finding the right research and resources to support her child.</p>
<p>“I need respite care, in order to have time to do research into respite care,” she says.</p>
<p>Another parent chimes in: “Depending on where your child is on the spectrum, you might just be grasping at anything you can get.” And another adds: “If you’re stressed out and someone says (people with autism) should stop eating cheese, I’m going to stop my child from eating cheese.”</p>
<p>Autism spectrum disorder (ASD) is the most common neurological disorder in children and it is impacting our society in profound ways. In Canada, more than 515,000 people are affected and approximately 87,000 of these are school age. ASD now affects one in 68 births. And, given <a href="http://pacificautismfamily.com/about-asd/">this prevalence rate</a>, it is estimated that there are 60,000 people affected by ASD in British Columbia alone.</p>
<p>For parents with children on the spectrum, finding credible research among the vast amount of information available can be challenging. In B.C., once a diagnosis is confirmed, families accessing autism funding must learn to navigate a complex system of therapies and supports. They are often left to their own devices to make immediate and critical decisions about where invest their money, knowing that each delay could <a href="http://pacificautismfamily.com/wp-content/uploads/2014/04/PAFC-Case-for-Support.pdf">cost their child the potential benefits of early intervention</a>. </p>
<p>These families urgently need better access to knowledge — on best practices, the latest research and evidence-based treatments and support.</p>
<p>To address this need, we at the <a href="http://www.healthdesignlab.ca/">Health Design Lab</a> at Emily Carr University have been collaborating with the <a href="http://pacificautismfamily.com/">Pacific Autism Family Network (PAFN)</a> since 2015 to <a href="http://informeveryautism.com/research/">gain a better understanding of the communication challenges and research needs of families</a> in the ASD community in B.C.</p>
<h2>An interactive vision wall</h2>
<p>The Health Design Lab is a research and design centre that works with industry and community partners to improve health products, services and systems — through a “human-centred design” approach. </p>
<p>We work with organizations and communities to ensure that the thing being designed (for example a system, object, communication, space or service) meets the needs of the people who will be using it. We view these users as experts of their own experiences and believe it is crucial to involve them in the design process.</p>
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<img alt="" src="https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=565&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=565&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192520/original/file-20171030-18683-1cyhtpc.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=565&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p>Our work with the Pacific Autism Family Network to understand family and researcher needs within the ASD community in B.C. has included creating an interactive installation at the grand opening of the Goodlife Fitness Family Autism Hub. We asked visitors to contribute to a <em>vision wall</em> and a <em>live bar graph</em>, highlighting where families currently access research.</p>
<h2>Mapping the system with string</h2>
<p>Most recently, in January 2017, HDL facilitated a series of four “co-creation workshops” with researchers and families to understand how these groups are communicating and to generate ideas to improve access to research. </p>
<p>We had 26 caregivers and family members of individuals on the spectrum, and 20 researchers and service providers participating in these workshops. </p>
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<img alt="" src="https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=442&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=442&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=442&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=555&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=555&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192522/original/file-20171030-18686-zkbtyj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=555&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p>The first half of each workshop aimed to understand the current state of communication between researchers and family members. We used a string mapping activity, in which researchers used blue string to indicate where they typically disseminate information, and families used orange string to indicate where they typically search for research and information. This highlighted gaps in the access and exchange of research. </p>
<p>We designed objects and hands-on activities to trigger conversation, foster dialogue and draw out latent and tacit knowledge from participants. The second half of the workshop used an interview format and group discussion to generate ideas for improving communication and knowledge exchange in the future.</p>
<p>“Co-creation” is a strategy that has been used in other health-care and social projects to <a href="http://www.tandfonline.com/doi/full/10.1080/15710880701875068?scroll=top&needAccess=true%20and%20http://www.amj.net.au/index.php/AMJ/article/viewFile/378/649">improve communication between stakeholders</a> by creating a level playing field in which all participants can express themselves in meaningful ways. We felt that co-creation activities would be useful in this context, too, to break down barriers between researchers and families and acknowledge both groups as knowledge holders.</p>
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<img alt="" src="https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/192521/original/file-20171030-18700-11mvlro.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<p>“I found the format of the workshop was incredibly useful. It allowed for the participants to talk freely as well as create a visual representation of how people have different experiences navigating the system,” said one participant. </p>
<h2>Videos, newsletters and storytelling</h2>
<p>In these workshops we learned that time, money, location, language and format are all barriers for families trying to access reliable and credible research. </p>
<p>To improve knowledge exchange, family and researcher suggestions included using: Knowledge brokers, a physical and online platform, video conferencing, mentorship opportunities and the delivery of research results through videos, newsletters and storytelling. </p>
<p>Overall, there was a clear desire for a web platform to curate credible ASD research for families and disseminate it through more diversified and accessible communication modes. With funding through PAFN, Emily Carr University and the Michael Smith Foundation for Health Research, we are now moving into the next phase of collaborative design of this web platform. </p>
<hr>
<p><em>Many faculty and students at Emily Carr University have contributed to this work over the past three years. We would like to acknowledge the contributions of: Jonathan Aitken (past HDL director), Caylee Raber (current HDL director), Deborah Shackleton (dean of design and dynamic media), and the following research assistants — Stacie Schatz, Ateret Buchman, Natalia Franca, Zora Trocme, Amanda Roy, Dina Smallman, Juliana Forero, Lauren Low and Rachelle Lortie.</em></p><img src="https://counter.theconversation.com/content/85243/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Caylee Raber works for Emily Carr University of Art + Design. </span></em></p>Families supporting children with autism urgently need better access to the latest research about evidence-based treatments. A new health design project from Emily Carr University is helping.Caylee Raber, Director of Health Design Lab, Emily Carr UniversityLicensed as Creative Commons – attribution, no derivatives.