For our final Lived Experience Partner Spotlight interview, we’re pleased to introduce Bayparvah Kaur Gehdu.
As well as studying for her PhD in Cognitive Psychology, Bayparvah is a Community Researcher and Lived Experience Advisor for a number of UK organisations, including Taraki. Her work focuses on improving clinical services and enhancing accessibility within community settings for neurodivergent and/or disabled individuals from racialised backgrounds.
For the last two years, she has worked with ieso to co-create our Responsible Innovation programme and embed lived experience across the organisation.
Hi Bayparvah! Could you tell us a bit about your background, and how you came to be a Lived Experience Partner with ieso?
Hello! I am a mental health researcher, and my work aims to leverage community-driven strengths and insights to create translational support that addresses mental health difficulties within the specific contexts in which they arise. Alongside my doctoral research, I have worked as a lived experience research consultant across the areas of mental health, disability, and neurodiversity. This has ranged from positions within academia, industry, at a grassroots level (with organisations such as Taraki), and within faith-based places to collectively challenge narratives and improve accessibility and support options for neurodivergent and/or disabled individuals from racialised communities.
I have recently been shortlisted for a Scope Disability Equality Award 2024 and have spoken about my work on BBC Asian Network, at the Wellcome Trust and Durham’s Neurodivergent Humanities Network.
As a Lived Experience Partner with ieso, I contribute to their mission to address service gaps and provide effective support for communities who are often systematically excluded from mental health research and product development. Working with ieso has also provided a unique opportunity for me to use both my research and lived experience expertise to strategically inform and shape research and product development with a patient-centred focus!
You co-created ieso’s Responsible Innovation Principles, which ensure our patients are at the heart of everything we do. How did you find working on such a foundational project?
Co-creating ieso’s Responsible Innovation Principles was an important and creative challenge on many levels. For example, for the principles to effectively inform future work, we had to ensure they were precise yet broad enough to incorporate diverse patient experiences. We have committed ourselves to building long-term sustainable relationships with communities that have often been marginalised and systematically excluded from research and clinical care. By doing so, we hope that all aspects of our work and products will contribute to countering existing health inequalities across national and global contexts. Importantly, involving lived experience expertise in the development of ieso’s Responsible Innovation Principles from the very beginning means we have co-developed ways of working that put patients’ needs first.
You’re now bringing your expertise as researcher into your work with ieso, and helping embed lived experience into the way we conduct studies and trials. How are you finding this process, and what challenges does it present?
This process has been exciting, enjoyable, and challenging! It’s been great to be able to develop my skills as a researcher by collaborating and working in multidisciplinary teams to ensure that patient voices are continually centred in our research at ieso. Working with this dual lens as a cognitive scientist and Lived Experience Partner has been a unique privilege.
Some of the challenges this has presented have involved balancing research and product development practice with prioritising patient needs and safety. However, navigating these considerations has been an enriching process as it continually forces us to conceptually question and unpack traditional ways of working to ensure we conduct effective and safe research, which empowers patients in the long term.
How do you think the digital mental health sector needs to evolve to ensure patients’ needs are prioritised?
When creating digital products that prioritise patient needs and care, we have to go beyond the conversation of good usability. Successful products must address accessibility both in their design and their conceptualisation of mental health difficulties across diverse patient groups. This challenge is not unique to the digital space; within the mental health sector, more intentional focus and sustained effort in understanding how intersectional factors can affect access to and engagement with care is needed to meaningfully prioritise patients’ needs.
For example, multi-disciplinary collaboration, driven by lived experience expertise, is essential to generate evidence to address mental health difficulties in groups that have been traditionally underrepresented and systematically excluded in research. Prioritising patient needs first requires a deep understanding of how our concepts and self-expressions of what constitutes ‘mental health difficulties’ vary across cultural subgroups and other identity intersections (such as language, faith, neurodivergence and disability).
By better appreciating the intersectional context around mental health difficulties, we are more likely to co-create bespoke, tailored mental health support options that prioritise patients’ needs. The wider digital mental health sector can also look to innovative practices used in academia and healthcare, and in companies like ieso, for inspiration on what good lived experience involvement looks like – so that we can all learn and improve together!
Read our Responsible Innovation principles in full here.
