|25 February, 2019||Bogna Drozdowska, Terry Quinn and Bernadett Tildy|
In this Q&A, Ms Bogna Drozdowska, PhD student, Institute of Cardiovascular and Medical Sciences, University of Glasgow, Dr Terry Quinn joint Chief Scientist Officer and Stroke Association Senior Clinical Lecturer and Honorary Consultant Physician, Institute of Cardiovascular and Medical Sciences, University of Glasgow and Bernadett Tildy, Research Awards Officer, The Stroke Association discuss how AMRC Open Research will help maximise the visibility of Stroke Association-funded research.
Can you tell us a little bit about your work?
BT: There are currently 1.2 million stroke survivors in the UK. Our vision is of a world where there are fewer strokes and all those affected by stroke get the help they need to live the life they want.
We believe in the power of research evidence to prevent stroke, save lives and enable stroke survivors to make the best possible recovery. We fund £2.5 million into research annually in the form of project and programme grants, and research career-developing fellowships and lectureships.
I am always frustrated by research that is hidden behind paywalls or that never even reaches publication. Thankfully the publishing landscape is changing, and more and more clinical research is open access.
BD: As part of my PhD, I have been looking at risk factors for cognitive decline following a stroke. There are many factors described but most are non-modifiable, for example, age, stroke severity and changes in acute physiology. As well as looking at the cognitive decline, I was interested to see if any factors could enhance or maintain recovery of cognition.
Studies of older adults suggest that social engagement and one’s positive perception of social activity may support healthy cognition. I wondered if social engagement could be a potentially modifiable factor. There are reasons to think that the relationship between social engagement and cognition would be true in stroke, but equally, there are plausible reasons why the association may not be apparent for stroke survivors. The use of the UK Biobank resource, with its wealth of data from a relatively large sample of stroke survivors, seemed a valuable starting point in pursuing this question.
Why AMRC Open Research?
BT: Alongside 23 other AMRC member charities, we signed up to be a part of AMRC Open Research because we think that all results from all research should be publicly available. We believe that everyone should be able to read about the results of research made possible through donations from members of the public.
We expect all our researchers to publish open access where possible. AMRC Open Research provides an extra option for them to do this, and as well as everything that is published in AMRC Open Research being open access, the fast open peer review process, reduced article processing fee and the large variety of article types available (from traditional article types to datasets to posters) will help to ensure that all results from Stroke Association-funded grants are able to be published online.
TQ: AMRC Open Research offers many advantages to the traditional method of publishing. Most attractive is the quick turnaround time. My group have papers with other journals that have been in peer review for months. Early career researchers are always keen to get their science into the public domain as soon as possible and the AMRC Open Research platform offers such an opportunity.
In order to develop new and effective therapies, whether they are to prevent stroke, treat acute stroke, or for rehabilitation, it is important that researchers have access to all existing evidence.
AMRC Open Research is supported by a collective of charities, including the Stroke Association. Stroke Association support has been transformative for my group and for stroke psychology research in general. My fellowship and programme grant are jointly funded by Stroke Association; I supervise PhD students, working in the field of post-stroke psychology supported by Stroke Association and many of my colleagues are Principal Investigators on Stroke Association projects. The Stroke Association provides excellent training and mentoring of their PhD and post-doctoral fellows through workshops and lectures. Their contribution to AMRC Open Research is another example of how the charity works to develop early career researchers and maximise the visibility of their research.
Why is it important that all research is accessible?
BT: We are delighted that Stroke Association-funded research can be accessible online by anyone, for free. We want to enable people affected by stroke to read about the research that the Stroke Association funds so that they can learn about their condition, feel empowered to seek further advice from their doctor, and participate in research trials.
By ensuring that results from Stroke Association-funded grants are published open access, we are increasing the visibility and availability of knowledge that our funded researchers have generated in the area of stroke.
In order to develop new and effective therapies, whether they are to prevent stroke, treat acute stroke, or for rehabilitation, it is important that researchers have access to all existing evidence. Ultimately, we expect some studies will provide evidence for changes in clinical practice, which should be disseminated as widely as possible. This is only possible if the articles are open access.
TQ: As a co-ordinating editor with Cochrane, I am always frustrated by research that is hidden behind paywalls or that never even reaches publication. Thankfully the publishing landscape is changing, and more and more clinical research is open access.
In the Glasgow stroke research group, we firmly believe that research should not be the sole preserve of academics. We have worked to create a stroke survivor ‘research users’ group’ where we have contributed to public engagement in science events and have created social media content about our research work. Making sure that our published research is accessible to everyone is very much aligned with this ethos.
I was keen that this research, and in particular the plain language summary, would be available to people whose lives have been affected by stroke. Improving our understanding of the psychological effects of stroke was voted the most important topic for future research in the James Lind Alliance priority setting exercise. It seems only fair that the people that asked for this research can access it and give us feedback.
We believe that everyone should be able to read about the results of research made possible through donations from members of the public.
A look to the future
BT: We hope that all stroke researchers consider AMRC Open Research as a platform to publish results from their Stroke Association-funded grant. As AMRC charities have a shared goal to serve their respective patient groups/service users, we hope that AMRC Open Research will be more accessible for the people affected by the conditions the research is studying.
TQ: I am keen for my work to be available to as broad a research readership as possible. The project spans disciplines of epidemiology, sociology, psychology, neurology and I would welcome feedback from researchers working in these or any other discipline. I hope that the work inspires others to join me in trying to understand and improve post-stroke psychology.
If you would like to view Bogna and Terry’s article or any of the articles published on AMRC Open Research then please visit AMRC Open Research. To find out more about the Stroke Association and their work please visit their website.