Dr Amy Russell is an Associate Professor of Health Inequalities at the University of Leeds Institute of Health Sciences, in the Faculty of Medicine & Health.
Tell us more about your role at University of Leeds.
I’m an Associate Professor at the Leeds Institute of Health Sciences in the School of Medicine. I lead a portfolio of research addressing health inequalities in healthcare and in health research. I conduct fieldwork and analysis for my Wellcome Trust Fellowship on Capacity, Consent & Autonomy in health research for people with a learning disability.
Day to day this means moving between my projects, consulting with my research partners in other universities, in the NHS and in self-advocacy organisations like Learning Disability England and Speak Up. I also supervise some brilliant PhD students, teach on health research modules and represent the Institute in Faculty level equality, diversity and inclusion activity.
What do you enjoy most about working in your sector?
Social Justice is my passion, and that means health and social care research is a fantastic place to be as so many of us are driven by that shared passion for change. In the last few years there has been a growing recognition of the value of expertise through lived experience, this has meant I can fund collaborations with colleagues who have a learning disability. I’ve built up a network of colleagues that support each other to succeed and share our resources and findings.
I also really enjoy that we have the space to innovate through interdisciplinary collaboration – the University of Leeds has invested in bringing different disciplines together through the Horizons Institute, which is a hugely valuable resource for me as someone who has worked across religious studies, gender studies, sociology and applied health research and continues to collaborate with colleagues in politics, history, performing arts and computing.
How important is innovation within your role/sector?
Innovation is exactly what it takes to change entrenched behaviour in a resource depleted setting like health and social care. When I think about innovation, I think about moving forward, creating a future with new technology, treatments, medicines etc. But am I innovating in what I do? I really like that question! What I do is look at the healthcare system that exists and from my perspective, what I see is a system that excludes certain people, for example people with a learning disability. I innovate to change the design, attitudes and beliefs of those within the system. While it might seem innovative to those embedded in the system, what feels uncomfortable for me is that – it should have been like that from the start. The way I approach it is that I am correcting an exclusionary design, not creating something brand new.
The innovation comes from not accepting the status quo – simply because it is the way it has always been, refusing to accept exclusion and thinking about systems and processes differently. Furthermore, innovation lies in our approach to tackling the exclusion. We are cultivating global collaborations between academia, the arts, civil society, governments, and transnational bodies like the World Health Organisation (WHO), to come together to solve these entrenched problems.
What professional achievement are you most proud of?
Academic work is full of incremental achievements to be proud of, each building on the previous one. During your PhD you never dream you will get it and you are so pleased you do, I still remember the feeling! And now as a PhD supervisor, I feel an overwhelming sense of pride when my supervisees achieve their own goals and secure that PhD.
One achievement that always feels close to my heart was running the largest feasibility Randomised Controlled Trial of people with a learning disability and type 2 diabetes and the findings contributing to the NHS England Rightcare Pathway for Diabetes, the nationally recognised guide on the care standards for diabetes and hosted by Diabetes UK on their website website. It was a huge team effort and fantastic to achieve.
A year or so later, I was awarded a Wellcome Trust Fellowship to pursue my own research, supporting me to drive a focus on the voices of people with lived experience. That was followed by gaining funding for a 6-month secondment to the WHO Disability Team to collaborate on the Global Report for Health Equity for Persons with a Disability. Knowing my work will be presented to the UN, read by governments, and used to energise discussions that make the health of people with a disability a priority area is a very motivating feeling and one I value having had the opportunity to contribute to.
What, if any, are the challenges of being a woman working in your sector?
Job insecurity is a huge challenge for anyone hoping to have a career and a family, caring responsibility, mortgage or any kind of financial stability. This can particularly affect women who leave academia to gain financial stability to be able to go on maternity leave. It’s no wonder so many women start research careers and leave a few years later after a series of short-term contracts.
As I’ve built my career, I’ve found a lot of steps to progression are designed for people with time, and flexible time. For example, being on maternity leave means you miss a significant time for publishing, and if your project wraps up whilst you are away, those extra opportunities like publications and conferences can be missed. That’s why I’m so pleased that The University of Leeds offers a maternity leave catch up grant (the Academic Development Fund), it’s a brilliant idea. But there are still more barriers, to progress further you need to be at key conferences, sometimes internationally, not a great fit with small children! And if you want to be seen as an expert and invited to speak, you need to be on social media, I think, speaking to contacts, networking, all things that take extra time and can be impossible with caring responsibilities.
Yet as I write this, I’ve got to hold my hands up and say, I started my academic life as a white, non-disabled woman with a supportive family around me. I have family help with my children, and I have certain privileges from my identity that shouldn’t be overlooked. Every woman’s experience of academia is different and relies on the intersections of their gender with multiple other characteristics like ethnicity, sexuality, class and disability.
What advice would you give to other women working in your sector?
Support each other, formally, informally and through equality, diversity and inclusion work. For a while I kept waiting until I’d “made it” before I put effort into establishing mentoring relationships, wondering what of value I could give to anyone else. I came to realise that anyone who gets to work in academia has ‘made it’ to some degree, there are so many people who would love to do what we do. I realised I shouldn’t wait until I got a certain grade, title or grant to start building up the careers of other women, I should always be supporting others.
My career has been supported because the School of Medicine at University of Leeds has made a commitment to Athena Swan. We have an on-site nursery, dedicated space for expressing and storing breast milk, term time working patterns and the Academic Development Fund which buys out people returning from a long period of leave like maternity or caring so they can boost their CV to make up for the inevitable gap those kinds of leave cause. My advice to other women is that all of these things were possible at Leeds so they can be possible elsewhere too, the more we share what is possible the greater power we have to advocate for change.
Finally, can you tell us more about your Wellcome Trust Fellowship?
I’d love to! My Wellcome Trust fellowship examines how capacity, consent and autonomy operate for people with a learning disability in health research. I’m working with several groups of people with a learning disability through self-advocacy organisations to explore what they think about my research, how they understand capacity and consent in research, and what they feel needs to happen next to improve inclusion in research.
As part of my Fellowship I’ve been sitting in ethics committees observing how they make decisions about ethical permission for studies involving people with a learning disability, discussions of how capacity might be assessed and discussions about informed consent. I’ve worked with the Health Research Authority to examine how inclusive its processes are and how they can be improved.
I’ve been speaking to researchers who have struggled to get their studies through ethics because they wanted to include people with a learning disability or people whose capacity is in question. I’ve also spoken to researchers from population wide studies about how they assess capacity and the gatekeeping that takes place when they go out to recruit people.
My personal feelings are that Wellcome has engaged with my vision for social justice and a health and research system that needs to change, and they’ve understood the need to rebalance power, so that the voices of the people whose lives are most impacted by the flaws in the system are front and centre. That makes me so excited to take this work forward and change the system until it works for everyone.