Dr Jo Welsman
Published on: 14 July 2015
Dr Jo Welsman is hoping her work at the Centre for Biomedical Modelling and Analysis will make the research much more accessible to the public.
Engaged research is about ensuring members of the public are involved throughout the lifetime of a particular research project or programme. Jo helps make the research from the Centre more accessible to the public by helping people understand how the research relates to diagnosis and involving people in designing the research carried out by the Centre’s academics.
In this Researcher in focus, we find out the impact of this work and how Jo's own personal background is helping to shape her work.
What is your current role about?
The Centre for Biomedical Modelling and Analysis uses mathematical modelling to help solve biomedical problems. This requires mathematical modellers to work across disciplines with other quantitative scientists around the University and externally. My role is to ensure the public voice is embedded in the work we do.
The challenge I face is that much of the work we do is in basic, or discovery research, the modelling is incredibly complex and the neurological conditions we are studying are not always well understood or straightforward to diagnose. So, part of my role will be more engagement focussed, so, informing, educating and consulting with lay audiences to increase public understanding of the importance of basic science in general, and our research into neurological conditions specifically.
Also, my role is to get members of the public with relevant lived experience involved in our research as collaborators or research partners - helping us throughout the research process from identifying research questions, helping to design the research, giving us direction on where to take that research and making sure the information is understandable and properly shared with other groups.
I also see a role for the public in ensuring all of our public facing communications, including our website, are as clear and accessible as possible.
What medical conditions does the mathematical modelling focus on?
Much of our work will focus on neurological disorders such as epilepsy, dementia and schizophrenia. For example, modelling of brain activity at rest to develop diagnostic tests which may support, current diagnostics, provide earlier diagnosis, or indicate future susceptibility to these neurological disorders.
We are involving members of the public with relevant lived experience in this research to help us assess whether people with these conditions want, or need these new tests, find out if they would be acceptable and useful for people with these conditions, and how they might be used to inform prognosis and treatment options.
How do you identify suitable members of the public to be involved in this research?
I would like to establish a core group of lay people to form an advisory group which is integral to the running and research work of the Centre.
As this is an extremely complex area of research I’m taking a pragmatic approach to finding people with relevant experience to work with us. I have already worked with someone who has done some mathematical modelling in his professional life but has also lived with a long term condition, and has cared for elderly relatives with neurological conditions. He has the kind of rounded experience that means he would be a good partner to start collaborating with.
The University also has great links with the University of the Third Age and they are very keen to get involved with our research.
I’ve just run a series of workshops for people with lived experience of epilepsy, dementia and schizophrenia and will be inviting people from these groups to get involved with the advisory group.
It was my own involvement as a patient with lived experience of mental illness in various health services research advisory groups that led me to fully realise how members of the public could and should be contributing to research.
Dr Jo Welsman, Engaged Research Fellow
Reaching members of the public to get involved with your research is always a challenge, but establishing networks of academics, clinicians, health professionals and people in other organisations such as charities and the publics they work with is the key to getting a broad range of people interested and involved. Once you have started working with members of the public they reach out to their own networks and hopefully the process snowballs.
The key to sustaining these networks is to ensure the process is two way – it’s not just me obtaining the information from people that I want, but myself and the other Centre staff have an obligation to ensure that there is a two-way flow of information, for example through appropriate feedback following involvement events, education or training, and other engagement events.
Keeping people regularly updated via Twitter and our website helps to keep people feeling involved and valued. Our recent workshops included people from Cornwall, Wales and the Midlands and I felt very privileged that people living often difficult lives with neurological disorders felt that our work was sufficiently interesting and important to travel such a long way to get involved.
How has your background helped shape your research?
In my early research career which was around children’s health and exercise I didn’t give much thought to public involvement, although looking back, we were always keen to promote the interests of our child participants in terms of ensuring that they (and not just their parents) were fully informed about their involvement as possible. We also spent a lot of time engaging with schools, teachers, parents and children to ensure a two-way flow of information between researchers and the public.
It was my own involvement as a patient with lived experience of mental illness in various health services research advisory groups that led me to fully realise how members of the public could and should be contributing to research. As I came back into a research role, my own research interests developed around understanding how members of the public, academics and researchers interact and engage with each other and how we can assess the quality of those interactions.
My research in the Centre will be focussed more on some of the challenges of engaged research in biomedical modelling and basic quantitative sciences.
Have you seen any major shifts in the way health services research and medical research is conducted in recent years?
Yes, patient and public involvement (PPI) in health services research is well established now and is a prerequisite for many funding bodies. The South West has a national reputation for excellent patient and public led research, and both here and nationally there are ways for the public to get involved with setting research priorities.
One of the big challenges for researchers in PPI now is to assess the impact of PPI on research. There are good ethical reasons for involving the public in research but aside from these, can we identify just what impact involving the public is having? What makes for good PPI and how to we measure the quality and success of it?
How can other researchers get involved in this project?
The Centre has just funded a round of seed corn projects which will develop research projects between established Exeter academics with up to two of the Centre’s research fellows. There is a second round of seed corn funding starting this autumn. If anyone wants to discuss issues around public engagement and involvement in their research then please get in touch with me.
What would you like to have achieved by the end of your two year contract?
That public involvement is at the heart of the research work of the Centre, and that all of the fellows and staff within the Centre are thinking about public involvement and engagement in their work.
I would also hope that through the interdisciplinary nature of so much of our research that public involvement and engagement becomes more commonplace in other disciplines, and I will have demonstrated through both research and practice the value of engaged research such that public involvement in quantitative biomedical research is much more commonplace.
Has your personal experience of a mental health condition helped you in this role?
Definitely. I am in a fairly unique position where I have the lived experience of mental health issues but also come from an academic/research background. It means that when I’m working with members of the public I can empathise, I’ve been that person who has struggled with a long term condition. But I also understand what academics need, the drivers and pressures that they are facing. I am in a good place to build those relationships and interactions between the public and the academics as I understand both of those worlds. In a recent workshop one of the participants said how relieved they had been to find out that the session was being led by someone with lived experience of long term illness.
How do you think the stigma around mental health can be tackled?
Part of my own recovery has been to be very open and honest about my illness, to admit that I’ve lived with it and I’ve come back and it’s a part of me. I don’t feel I have to hide it and I hope that my openness encourages other people to be open too. You wouldn’t be embarrassed by a broken leg, so you shouldn’t feel ashamed of a mental illness – this openness goes a long way to tackle the fear and suspicion that surrounds mental health conditions.
Do you think educating the public about mental health conditions helps to reduce stigma?
Yes, there is a definite lack of understanding amongst the general public, but also from those who live with mental health issues, about what treatments are available and how they can access these treatments etc. That’s why public involvement and engagement around research is so crucial.
As part of my role as Co-Chair of the Lived Experience Group at the Mood Disorders Centre (MDC) I organised an open day to bring members of the public in to find out more about current research into depression, but also to engage with health professionals and others with similar lived experience. We are planning a similar event based around Mindfulness based therapies for this autumn.
I am increasingly aware that the work of our Centre has the potential to challenge current understanding of neurological conditions and hopefully, through increased public understanding of their origins, to reduce the stigma people living with them face.
How does the Lived Experience Group help to tackle the stigma that surrounds mental health conditions?
In addition to the open days mentioned above, members of the Lived Experience Group are involved in teaching, not just within the psychology department, but with people training to be health professionals such as medical imagers and medical students. We also run sessions for the people who train the students.
Through very open conversations we allow trainees to gain a more rounded understanding of conditions such as depression and anxiety and what it is like to experience mental health services, treatments and therapies. Stigma around mental health may be greatly reduced if we are all more open, honest and have access to information in order to gain a better understanding.