In the world of global public health research, patients often have little to no voice in conversations around clinical research, even though the many health management tools, practices, and procedures resulting from this research affect patients the most. Dr. Soham Bandyopadhyay, academic clinician at the University of Oxford and a teaching associate for the Oxford University Global Surgery Group, seeks to change this.
Bandyopadhyay is a strong advocate for elevating patients’ voices, particularly in conversations around clinical research and global public health. He believes that preprints can help be a bridge for faster and more inclusive conversations between clinical researchers, healthcare professionals, and patients, as long as the right mechanisms are in place to ensure the research is of good quality and understandable by all parties.
We talked with Bandyopadhyay, who is also a member of the Research Square Advisory Board, to get a clearer understanding of these mechanisms, as well as his vision for widening the conversations about clinical research through preprints.
The COVID-19 pandemic has been one of the deadliest global public health issues of the modern age. As a clinical researcher in the trenches, how have preprints helped save lives during these difficult times?
Preprints have been around long before the pandemic, but I think they’ve really taken off during it. One of the essential elements of preprints has been the fact that they can communicate the results from trials faster than traditional peer review processes, and as such can affect policy and change practices more quickly, for example: surgical trials looking at individuals’ COVID statuses influencing when an individual should be swabbed and taken to theatre.
Preliminary results of these large studies being released ahead of publication in peer reviewed journals have allowed individuals to critique the findings in the preprints - and also to ensure what they’re doing is entirely backed up by the data. I think this has allowed for agile thinking and agile management, which is really essential for tackling a disease that we knew very little about at the start of the pandemic, and now we know a lot more.
One powerful advantage of preprints during the pandemic has been their timeliness: quickly disseminating research to fight the spread of disease and find a cure. Do you think there will be a need for such a fast dissemination of clinical research through preprints after the pandemic is over? Why or why not?
The fact is, there are lots of diseases in this world where we’re not entirely sure we’re managing them correctly. I can remember once a trial came out on VTE prophylaxis in stroke care. And in that trial, it showed TED stockings did more harm than good. That practice of using them changed. I can imagine there was a delay between submitting that paper, having gone through peer review, and then being published. And during that period of time, more patients were potentially being harmed wearing TED stockings. So this benefit of the preprints still exists after the pandemic.
Coupled with data repositories, where an individual can run the stats to make sure those findings are indeed what they say they are, you’ve got the overall implications of results from preprints and all the data to ensure the validity of those results. With this in mind, preprints could greatly change the dynamics of when and how quickly best practices can evolve. I think that’s a game changer in terms of patient safety and health.
Should preprints and other research be accessible to those who don’t have a medical background? Why or why not?
I’ve always been a champion of individuals having access to all the information they need to make the most important decisions, but sometimes that information is presented in a way that’s not understandable. Often, I see my colleagues use jargon most individuals would not understand. For example, if you talk about laparoscopic surgery, the average individual doesn’t know what laparoscopy and keyhole surgery mean. They’re going to be lost.
A lot of these preprints obviously do use a lot of scientific words, and the reason a lot of them don’t get accepted is because of their English. In some cases, it’s hard to decipher what certain authors really mean or what’s the intent behind their message. That can get lost in translation. For example, if a scientist uses a lot of technical language and only a few sentences are understood, that could potentially cause worry - or joy - in a patient who doesn’t quite understand the intricacies of the text.
So, yes, preprints being accessible to the masses is really good, if the language used is accessible. This can be done through English lay summaries. These could be mandatory for all pre-print submissions so that anyone reading them can understand what's being said. Or you could do what the BMJ and The Lancet do, which is ask for the author to highlight key points about the study in terms of methods or implications of the findings.
What do you think we can do to help ensure preprints are used responsibly?
I think discussions around this have been very vast. There are lots of different ideas about how to approach it. I think some may be more restrictive than others. Some could be thought of as a kind of us acting as gatekeepers to the research where we decide what is allowed to be published and what’s not allowed to be published.
And there’s the other sense that we can crowdsource knowledge and ensure that individuals looking at what’s out there are critiquing it, writing down comments to showcase potential vulnerabilities. Or we can go down the route that we’re currently going, which is putting out disclaimers so individuals know, when they’re reading it, there’s some hesitancy about the information. It’s what Twitter does currently, where it says “this is not entirely true,” or “maybe there’s information to the contrary of this,” through popups when we’re reading. Given it’s such a novel thing currently, it’s very hard to know the best path forward. I think it’s going to be a few years before we find out what this is. I think we just have to ride out the waters in the meantime. Maybe we might need an ethics committee in the future to decide how best to proceed. But at the moment, I think we’re doing the best we can with what we know.
You’re known to be passionate about bringing the voices of patients and the general public to the table when discussing research. Preprints have been facilitating a lot of public discussion through social media. Is this a good thing? Why or why not?
At the end of the day, individuals’ lives are what medical research is all about. The whole point of research is to do the best for the patients. It’s really integral that we have patients’ voices in this. I’ve often seen, for example, decisions made didactically from the top, just “this is what we’re going to do, because we think this is a good path for you,” rather than actually listening to what patients want and think is best for themselves. So discussions and bringing people’s voices and giving them the amplifier they need is going to be really essential.
However, there is a risk to this, and this relates back to digital information. If we give out the preprint manuscripts to everyone and we’re only allowing little chunks of information (to get through), there is a risk that we have misinformation campaigns, that we have people believing, for example, that a vaccine could lead to disastrous consequences.
These aren’t necessarily true. But because you hear this Chinese whisper effect going on, as you see in social media, you can cause damage. So I think this is an integral issue of social media rather than an issue with the research. You can’t stop voices talking. We do, however, need voices speaking out about their own personal experiences in research.
The scholarly publishing industry is rapidly evolving thanks to preprints, the open science movement, and other factors. What role do you see preprints playing in the clinical sciences five years from now?
As we move more toward the world of open science, with open access papers, data repositories, it is key that journals have less power in deciding what gets published where and what’s high impact and what’s low impact.. I think preprints will be central to this.
I remember a time when Albert Einstein, for example, submitted a paper. The journal said, “We’re going to send this to peer review.” And then Einstein said, “How can someone understand my research better than me?” And he pulled it from the journal and then sent it to somewhere else that didn’t do that peer review. We regard his work as seminal. So it isn’t necessary.
Peer review isn’t the only way to get seminal research out to the public. The public, and the scientific community in particular, should be trained in critiquing a paper. If we’re saying that, without peer review, scientists reading the paper won’t understand whether it’s true or false, I think that’s quite ironic given those are the same individuals being asked to review the paper.
And if papers can be peer reviewed as part of a journal process, they can most definitely be critiqued as a preprint, provided they’ve got all of the data in front of them. So I think preprints will continue to play a critical role, provided it goes hand-in-hand with open data.
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