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Author: Edinburgh Neuroscience
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“Why?” is a question that can drive many parents to exhaustion. I was the child people called difficult or stubborn because I asked too many of them. When the answers I received didn’t satisfy my curiosity, I went looking for my own. Years later, as a neuroscientist and a mother of two equally inquisitive children, I see those endless questions differently. They weren’t a problem, they were the beginning of scientific thinking. Curiosity is not something we need to teach children; it is something they are born with. When my children started school, I realised that their endless questions weren’t unique. Almost every child wants to understand how the world works. I discovered science by chance through a summer internship in an immunology lab when I was in my twenties…
Why should curiosity have to wait that long to meet science?
This question sparked an idea: a small workshop for primary school children about the brain and how scientists study it. I called it Brain Blocks. The challenge was that I had no experience designing a school workshop, how long it should be, how to approach schools, or what activities would work.
Lesson #1 in public engagement: your network is your biggest resource
With support from the Institute for Regeneration and Repair (IRR) public engagement team and colleagues at Edinburgh Neuroscience, I gathered advice, borrowed materials, and learned how to design activities that were both engaging and adaptable. Slowly, the workshop came together.
Children stuck action cards on brain hats to label different brain functions. They learned about neurons using craft materials and plush toys (which I stole from my children).
Their favourite activity by far was creating their first “immune stain” using glitter and glue: messy, interactive, and memorable. Each short session mixed brief explanations with hands-on activities to keep attention high. And, of course, it was filled with questions, lots and lots of “why?”
The positive response encouraged me to try new audiences. I was invited to run a workshop for nursery children about neurodiversity. At that age, attention spans are short, so instead of talks I wrote simple songs about how every brain works differently. The children danced, moved, and reflected on their own strengths: some were great with numbers, others with pictures, others with movement. It became a joyful introduction to the idea that there is no single “normal” brain. Along the way, I learned a second lesson…
Lesson #2 in public engagement: materials are recyclable
Activities can be adapted for different audiences, communities, and topics. As an Arab Muslim woman who enjoys challenging stereotypes about who can be a scientist, I also wanted to reach underrepresented groups. I delivered the workshop through the Muslim Women’s Association in Edinburgh, adapting the same activities for different groups of children and diverse backgrounds.
Later, support from the ScotPEN–Explorathon Enabling Fund helped expand the project into a larger programme with technicians and researchers studying different topics. Children built paper brain hats, crafted neurons with pipe cleaners and googly eyes, and explored stem cells and MRI scans through interactive demonstrations. They also received “cell cards” with fun scientific facts to take home, alongside small prizes from a spin-the-wheel game—neuron keyrings, brain stickers, and more.
Lesson #3 in public engagement: collaboration makes science more impactful
Bringing together researchers with different expertise creates richer experiences for young learners. I have since shared these workshop ideas with other researchers who have adapted them to their own fields.
The activities continue to evolve, just like the questions children ask.
Because in the end, the goal isn’t to give children all the answers. It’s to show them that their “why?” is powerful, and that science is one way to start exploring it.
Dr Rana Fetit is a Postdoctoral Research Fellow at the Institute for Regeneration and Repair (IRR), University of Edinburgh.
Her research focuses on modelling human conditions using stem cells and 3D-organoid models.
This post is Part II in a series on Public Engagement. At an EN:PM session in February, the programme included a public engagement showcase. We had a lot of positive feedback on the different types and approaches so we thought it would be a great idea to serialise them on the blog. Part I : Organising a rare disease community conference by Cathy Abbott
At our EN:PM session in February, the programme included a public engagement showcase. We had a lot of positive feedback on the different types and approaches so we thought it would be a great idea to serialise them on the blog. It seems fitting that this should feature as one of our early posts as Edinburgh Neuroscience was of course at the vanguard of public engagement and outreach when it was established exactly 20 years ago. Public engagement is now an integral part of contemporary research activity; the mutually beneficial rewards, universally acknowledged.
And so, Cathy Abbott gives us insight into organising and hosting a conference with a difference…
Cathy Abbott
Within Edinburgh Neuroscience we have so many fantastic examples of engagement with the public, from classes of schoolchildren, to visitors to the Science Festival and beyond. But what do you do when your intended target audience is small and has members scattered across the world who may not be able to travel, and who speak a whole range of different languages?
This was the challenge we faced with the rare genetic disorder my lab works on, the snappily titled, EEF1A2 Related Neurodevelopmental Disorder. This condition affects about 1 in 35,000 people and was only discovered 14 years ago, so we only know of a few hundred affected children and their families.
The disorder is very variable, but in almost all cases leads to early onset epilepsy, which doesn’t always respond to anti-seizure medication. Affected individuals always have a degree of intellectual disability, which can be severe, and many have behavioural issues. Mobility is often affected – some children need wheelchairs and whilst others can walk, they may have movement disorders. All in all, it is easy to imagine the daily issues faced by many families, and the challenges posed by overseas travel.
For many years, I had wanted to host a conference of some description for the EEF1A2 community. I knew from the active Facebook group of affected families that there was a real demand, not just for more information, but for coming together in some way. So, when CMVM first created a new PhD programme, Engagement for Impact, in which students would do a conventional PhD with embedded engagement training and activities, I put in a proposal with Sue Fletcher-Watson (and her extensive engagement expertise) on board as second supervisor. We were lucky enough to recruit Heather Love, who worked wonders to develop the initial idea into a workable format.
Crucially, the content of the conference was co-created with families via the Facebook group. Heather devised a survey to determine priorities and to collect free text suggestions. The families were very clear that they wanted to know more about epilepsy treatment, about sleep, and about how research is done, so we set about assembling a team of speakers, from our lab and beyond.
The decision to make the conference online was an easy one, in the light of the families’ circumstances, but that was only the start. We had to consider time zones:
How late could we hang around at work delivering the content to suit people in the US?
Would IT people stay around to help us?
What about people on the other side of the world?
It was obvious that compromises just had to be made, but then we had to think of how we could make the content as widely accessible as possible. Many respondents to the survey (using automated translation tools) told us that they were really keen to attend but didn’t understand English.
The solution Heather hit on was to run the conference on Zoom, recording the whole thing and with subtitles enabled. Once the conference was over, she would edit the subtitles for clarity and accuracy, then upload the videos to YouTube. This meant that viewers could use YouTube’s automated translation of the subtitles, synced to the videos of people speaking.
We finally ran the conference in March of 2024. Over a hundred people registered for the live event. This may not sound like many, but it corresponds to about a third of the total target audience worldwide. Considering how many people couldn’t attend because of timing or language issues, we took this as a win! People who registered in advance were sent a little conference pack consisting of an EEF1A2-branded notebook and pin badge; a leaflet about the disorder; a credit card sized information card with a brief description of EEF1A2 and a QR code linking to our website.
To put not only a name but also a lovely community to my child’s disorder is a blessing
Comments such as this in the chat during the talks, and in the feedback survey after the event, were incredibly heartening and moving. One father in New Zealand had got up at 4am to watch as much as he could before getting his children up for school.
You couldn’t ask for more, really. This is why engagement is so important.
Cathy Abbott is Professor of Mammalian Molecular Genetics at the Institute for Neuroscience and Cardiovascular Research, University of Edinburgh
Last year, I had the honour of giving the Doug Altman Memorial Lecture at the Peer Review Congress in Chicago. As long ago as 1994, Doug famously wrote, ‘we need less research, better research, and research done for the right reasons’ (Altman, 1994). And so, I took as my theme, Does the Journal Article have a future?
Recent discussions around our preparations for the 2029 REF submission made me think again about the central role that publication plays in our work. REF have provided greater clarity that it is the institution, not individuals, who are assessed. However, it is our publications, as individuals, which make the lion’s share of the outputs being assessed. The ongoing discussions about whether the University should consider renewing the various deals we have with publishers such as Elsevier, or consider these to represent poor value for money, are a further reason to think about this.
Scientific publishing is a hugely profitable industry. Ever since Robert Maxwell grew Pergamon Press after the second war, printing scientific articles has also been a licence to print money (Buranyi, 2017). [My contemporaries may remember Maxwell as the ‘saviour’ of the 1973 Edinburgh Commonwealth Games – which ended up losing £4m and cost the City of Edinburgh Council £500,000. His daughter, Ghislane, has also been in the news recently]. Mark Neff, an associate professor in environmental studies as Western Washington University, has written:
Between 1959 and 1965, Pergamon grew from 40 titles to 150. Whereas scientific norms at the time viewed scientific publishing as a public good that should not be subject to profit motives, Maxwell understood that scientific publishing was a market unlike others because there was an almost ceaseless growth of demand, and free labor. Scientists would pressure their institutional libraries to secure access to any serious journal publishing work relevant to their own. If the generous postwar government funding of science was the push that fueled rapid growth of science, the profit-seeking appetite of publishers was the pull. (Neff, 2020)
To unpick this a little, the ‘almost ceaseless growth in demand’ is driven, in large part, by our need as researchers to publish, so that we can demonstrate to our employers, our funders and our peers what we have been doing, and how great we are. Where these evaluations are done by people who can’t, or wont, invest the time and expertise critically to evaluate the originality, significance and rigour of a publication, they fall back to using proxy measures like the journal in which the work was published. This is a very poor measure of anything, and also establishes a role for scientific journals as the gatekeepers to our careers.
‘Free labor’ (sic) is Mark’s nice way of saying that just about everything of value in scientific publishing is either given or paid for by the academic community. We plan the research, do the work, write it up, format it in the required style, and submit it for publication. Then, other researchers play the role of (usually unpaid) academic editors, deciding whether it should go to review, and by whom. Other researchers do the peer review, then it’s off to get typeset, often with very little quality control. Then we pay for the privilege of having our work published; and other researchers pay (directly, or through their institutions), for the privilege of reading the work. The annual cost to UoE of these ‘read and publish’ deals is around £3.8m.
So how profitable is scientific publishing? In 2024 Wiley reported profits of $331m, Springer Nature $489m, and Elsevier a whopping $1.498bn, each with profit margins of over 30%, more than either Apple or Amazon (Beigel et al, 2025); and built, as outlined above, largely on the free labour of the academic community.
Of course, as ‘public’ researchers (funded by taxpayers or charities rather than for-profit companies) we usually want our research findings to be disseminated and read widely, so that others can build on or challenge our work, and so that our contribution can be appropriately recognised. Are there other vehicles for this, beyond the traditional journal article? The days when papers actually required paper are long gone, and electronic distribution is much more efficient – and cheaper – than printing and posting to subscribers and libraries.
Where Journals might add value compared with, for example, preprint servers is firstly through improved dissemination – reaching your desired audience – and secondly as an indicator of the quality, usefulness and provenance of the work. Is this worth reading? Is this researcher any good? Electronic searching means we can identify articles from a huge range of journals, rather than the few for which we receive Table of Contents alerts, so the dissemination gains are marginal.
As a quality indicator, peer review can lead to substantial improvements between submission and publication, but this is not always so. There are many egregious examples of wonky research published in journals of very high impact (see, for instance, Obokata et al, 2014) and this means that every research user, everyone who might plan their future work on the basis of what is in the literature, needs to be able to do their own critical appraisal, their own peer review. Like assessing researchers, there is no alternative to reading the freaking paper, wherever it was published!
That critical appraisal is of course greatly facilitated if, as research users, we have access to the data, the code, the methods, and if we know the extent to which these were established in advance. I’m not saying we should always check every detail, but we should be able to do ‘spot checks’ to increase our confidence in the findings. That’s why I’m such a strong advocate of open research – I need to know these things to make a judgement about what I can trust. With apologies to my peers, there are too many contemporary examples of poorly conducted or simply fraudulent research for me to trust if I am not able to verify.
For peer review to add value, it needs to ensure quality all, or nearly all, of the time. That is not currently the case, if indeed it has ever been. There is also the question of the costs of conventional publishing in delays to publication. Several years ago we audited the publication pathway for animal research in Edinburgh, interested in the times from the work being conducted, submitted for publication, and then published. We only had details of the submission date for the final journal of publication, so our analysis did not take into account any previous submissions to other journals. We found a median interval between the work being initiated and being published of 987 days; of which 235 days, or 24%, was between submission and publication. We hope our work has value; and value declines, or depreciates, over time. In fact, the New Zealand Tax Office has a published rate for the depreciation of scientific publications – the rate at which companies holding such assets can write off the value – of 20% per year. Without wishing to over-stretch the application of financial accounting principles here, those 235 days equate to a loss of value in our published work of 12%, compared with dissemination through preprint servers.
It is I think instructive to think a little more about the value of information we produce. Moody and Law (1999) have articulated 7 laws on the value of information as a public good:
1. Information Is (Infinitely) Shareable
I can send my information to anyone, and they can share it onwards. For several years I received a daily notification of the lunch menu in a hospital where I had previously worked, so infinite sharing of information is not always a good thing.
2. The Value of Information Increases With Use
Since the costs of re-use are trivially small, the costs of production are shared between more users, and the unit cost falls; and the re-use creates a further information asset, which increases value
3. Information is Perishable
If you don’t look after your information, it will end up on a USB stick or in a file format that you can no longer access
4. The Value of Information Increases With Accuracy
This is self evident, and again makes the case for the sharing of methods, data, code that might give greater confidence in the accuracy of the information.
5. The Value of Information Increases When Combined With Other Information
My day job is in evidence synthesis (see, for instance, AD-SOLES), so I’m bound to agree wholeheartedly with this.
6. More Is Not Necessarily Better
We’re back to Doug Altman here!
7. Information is not Depletable
Your using my information does not reduce the amount of information I have.
Pulling this all together, I hope I’ve been able to convince you that the quality, the original, the significance and the rigour of our research is much (much) more important than the venue in which it ends up being published; that the internet has effectively cut the ties that bound us to the traditional publishing model; that scientific publishers are desperately struggling to find new ways of making money from us, while seeking to convince us that the journal article is not dead; and to persuade you of the benefits of pre-registration, preprint servers, and publishing your data and code alongside your research findings.
Malcolm MacLeod
Professor of Neurology and Translational Neuroscience; Co-Director, Edinburgh Neuroscience
*Note: Edinburgh Neuroscience is coordinating the University’s submission to REF2029 Unit of Assessment 4, Psychology, Psychiatry and Neuroscience.
References:
Altman, D.G. (1994) The scandal of poor medical research, British Medical Journal, 308:283; 10.1136/bmj.308.6924.283
Beigel, F., Brockington, D., Crosetto, P., Derrick, G, Fyfe, A., Barreiro, P.G., Hanson, M.A., Haustein, S., Lariviere, V., Noe, C., Pinfield, S. & Wilsdon, J. (2025) The Drain of Scientific Publishing. https://arxiv.org/pdf/2511.04820
Moody, D. & Walsh, P. (1999, 23-25 June) Measuring The Value Of Information: An Asset Valuation Approach, paper presented at the Seventh European Conference on Information Systems [Conference presentation]. Seventh European Conference on Information Systems (ECIS’99), Copenhagen Business School, Frederiksberg, Denmark. Download PDF
We we have found through our newsletters and direct engagement with the community that sharing personal stories and experiences is very popular and that’s something we’d like to explore further. We can talk research culture, policy implementation, funding proposals, teaching and learning, tips and tricks, career progression… whatever you like!
We are busy working away on a plan to provide scheduled content – perhaps once per month – but we are very much open to suggestions and contributions (please email us at edinburgh.neuroscience@ed.ac.uk).
We finally ran the conference in March of 2024. Over a hundred people registered for the live event. This may not sound like many, but it corresponds to about a third of the total target audience worldwide. Considering how many people couldn’t attend because of timing or language issues, we took this as a win! People who registered in advance were sent a little conference pack consisting of an EEF1A2-branded notebook and pin badge; a leaflet about the disorder; a credit card sized information card with a brief description of EEF1A2 and a QR code linking to our website.
