” “For research to be really impactful, the public has to be involved. They need to understand the research and we need to help to connect the research to what people care about,” says Imran Khan, Head of Public Engagement at Wellcome Trust in the UK, one of the world’s largest research funders. But do the public wish to be involved in science? The German and Swedish Science Barometers, the EU-project ORION Open Science European public attitudes survey and the Wellcome Trust Global Monitor have all asked this question….
After the presentations, the participants discussed in smaller groups why and how the public should be involved in science. They then shared their thoughts both orally and by using an online tool. According to the workshop participants, the public should be involved in science because:
Science will have an impact on their lives.
We need the views of the public.
Knowledge gives insights and increases trust. It’s a base for democracy.
It can improve quality and broaden perspectives.
They pay for it!
But how can we interest the public to get involved? Some suggestions from the participants in the workshop included:
Must depart from their own interest and relevance.
The wow effect – science is fun!
Create arenas for connection between researchers and the public.
Show how research affects society and how you can contribute.
Abstract: In this paper we describe our current efforts towards building a framework that extends the functionality of an Open Access Repository by implementing processes to incorporate the ongoing trends in social media into the context of a digital collection. We refer to these processes collectively as the Social Media Engine. The purpose of our framework is twofold: first, we propose to challenge some of the preconceived notions of digital libraries by making repositories more dynamic; and second, by challenging this notion we want to promote public engagement and open scholarship. As a work in progress, we believe that a real challenge lies in investigating the implications that these two points introduce within the context of the humanities.
Abstract: For the educators among us who care about the Open Access Movement, are we prepared for what comes in a post-OA world? Suppose that Plan-S (or another initiative with similar objectives) succeeds in making vast quantities of previously paywalled scientific literature openly available to anyone with an Internet connection.
On one hand, it’s the utopia we’ve fought for: our best ideas, set free to circulate among the minds who will incorporate them toward solving the big issues humanity faces. On the other hand, what if scientific literature becomes weaponized in the same way that journalism has in recent years, where legitimate work gets sewn with seeds of doubt, and bad-faith efforts gain more traction than they deserve. When our research institutions continue to have trouble assessing science literature, to what measure should laypersons hold themselves?
In this cheery presentation, we will imagine a possible dystopia of our own creation, followed by a discussion of tools, tech, and approaches that could be used in an undergraduate education setting to make our future scientists better research communicators and our future citizens better research consumers.
Abstract: Crowdsourcing shifts medical research from a closed environment to an open collaboration between the public and researchers. We define crowdsourcing as an approach to problem solving which involves an organization having a large group attempt to solve a problem or part of a problem, then sharing solutions. Crowdsourcing allows large groups of individuals to participate in medical research through innovation challenges, hackathons, and related activities. The purpose of this literature review is to examine the definition, concepts, and applications of crowdsourcing in medicine. This multi-disciplinary review defines crowdsourcing for medicine, identifies conceptual antecedents (collective intelligence and open source models), and explores implications of the approach. Several critiques of crowdsourcing are also examined. Although several crowdsourcing definitions exist, there are two essential elements: (1) having a large group of individuals, including those with skills and those without skills, propose potential solutions; (2) sharing solutions through implementation or open access materials. The public can be a central force in contributing to formative, pre-clinical, and clinical research. A growing evidence base suggests that crowdsourcing in medicine can result in high-quality outcomes, broad community engagement, and more open science.
“A growing number of us patients are experiencing a comparable frustration at having newly minted knowledge kept from us—for financial reasons. While I fully understand the economic needs of the people who create and publish knowledge, I implore all of them—all of you—to “remember the patients.” In your deliberations about policy, please remember the needs of the people for whose ultimate benefit your work exists. And modify the financial structure of this work, to prioritise not just creating the knowledge but also delivering it to those in medical need.
Families coping with desperate illness hope that everyone in the healing professions will do everything in their power to bring the newest findings to the point of need. Little do they know that those parties sometimes have other priorities. You should see the look of fear, even outrage, when they learn of this.
If I’m suffering, and remedies are developed, what needs should outweigh mine and keep those remedies hidden? If my baby has a potentially fatal disease, and useful knowledge has been developed, what needs should outweigh ours? Or, if my baby’s condition is not fatal but potentially disabling, and new knowledge has come to light, what needs should outweigh ours to keep that hidden?…”
“It is my strong belief that scientific output should not be published only in scientific journals for the learned few but should be available to all. Currently, I think African scientists are making significant progress in science communication, but we still have a long way to go…. ”
“In the future, these potential benefits of requiring a peer-reviewed, publicly available comprehensive final report will be weighed against the costs. In a few years, it will be possible to determine if these final reports have expanded the reach of each research study, whether they are used in systematic reviews, and how lessons learned from peer review of the final reports have changed the way that the institute does its work. For the present, it may be enough to hope that an openly accessible peer-reviewed comprehensive final research report will help to increase public trust in research. It is possible that the sponsors of the legislation were on to something important when they set the institute on this path. However, the realization of their vision is in its infancy and its putative benefits are largely speculative. There is still much to learn….”
“What does “making research knowledge public” look like to you?
Juan Pablo Alperin: I see open access as a very basic, initial step toward making research knowledge public. We never know who in society might care about our work, regardless of how niche an audience we might have in mind. My own research and other evidence points to the fact that there are members of the public who want to know. Even if faculty don’t want to change anything else about what they do, they can make sure that their research is at least accessible to anyone who wants to see it. For me, making research knowledge public is about enabling and supporting an ecosystem in which that becomes the norm.
Hannah McGregor: I think open access should be the default and baseline, particularly for journals. But access goes beyond just paywalls; it also has to do with language and discoverability. Journals—open access or not—still circulate within particular systems of discoverability that are available mostly to people who know how universities work.
The side of things that I have been working on is what my colleague Jon Bath calls public-first scholarship. I’ve been thinking about what it means to do your work in the public from the get-go, rather than doing it within the university and then making it public later. I’m making podcasts, because podcasts are not a university medium. They are a medium that has their own logic, a logic that is inherently open and inherently public-facing. I want the audience for my work to not be precluded by people who have access to scholarship….”
“Take the most rigorous study possible – a large double blind clinical trial. It can cost tens of millions of dollars to conduct such a trial, and (depending on what assessment is being conducted) take years of bureaucratic wrangling to complete.
This creates (some would argue by design) a “monopoly of proof,” leaving billion dollar companies among the few who can (quite literally) afford to prove their products work.
So how does a new wellness product company provide solid evidence that their products are the real deal?…
Every purchaser of Qualia Mind or Qualia Focus gets free access to the assessment tools from Cambridge Brain Sciences used in the pilot study so consumers can test their personal mental performance before and after use to see if the products work for them….”
“Dislike of gold open access is also partly responsible for researchers’ opposition to Plan S. Lynn Kamerlin, professor of structural biology atUppsala University, is one of the instigators of the open letter against it. While she pledges strong support for open access, she is happy with the current rate of progress and sees the recent “explosion” in the use of preprint servers as illustrative of the range of routes towards it. She fears that the details of Plan S’ “embargo requirements and repository technical requirements…are so draconian that paid-for gold becomes the easiest way to fulfil them”. This will convert the “nudges” towards gold in existing funder mandates (which she supports) into a “shove”, which will be “a disaster for the research community” because it will disadvantage those unable to pay article processing charges and “seriously jeopardise the much more rigorous quality control standards provided by high-quality society journals compared to the high-volume for-profit business model, which has an inbuilt conflict of interest”.
Nor is Kamerlin alone in expressing a concern that the allegedly lower standards of peer review practised by fully open access journals have compromised quality. But, for Suber, debating quality rather misses the point. “Yes, there is some low-quality open access work, but there’s also low-quality subscription journal work, and people who step back [to see the bigger picture] always acknowledge that,” he says. “Quality and access are completely independent of each other. Open access isn’t a kind of peer review, it’s a kind of dissemination.”
However, he agrees with Kamerlin that the “green” form of open access, whereby academics post work that is in subscription journals on their institutional repositories or elsewhere…is another good option….”