Artie Carden they/them

Community & Lived Experience Researcher

I have a background in the arts as a mixed media creative. With experience of most forms of visual art but especially collage, line drawing, and painting. Some physical performance including acting, singing, some dance (all amature level), experience with clowning, improv, and comedia del arte. I have a BA in Creative and Professional Writing, plus over 10 years experience in video creation. I have an interested in learning more about, and possibly assisting with, Creative Methodology techniques in research. 

I have a personal interest in research, particularly around: chronic health conditions, conditions considered ‘rare’ or ‘complex’ and neurodivergence. I create media for patients in plain language to allow patients more power in their own care. 

The communities I have links to are: trans/nonbinary, queer/bisexual/asexual, chronic illness/disability and neurodivergence (especially ‘rare’ or misunderstood chronic illnesses and ADHD/Autism/dyslexia/auditory processing disorder), fat communities, non-academics, rurally based. 

I do not have a long history officially within research due to not being an academic. I participated as a community researcher early 2024 for REN with the NHS to explore what marginalised groups’ (in the areas around Brighton & Hove) experiences were in healthcare settings. I specifically spoke with other trans people in my local, more rural area in Sussex. 

I am assisting with a project with the aim of encouraging more people to participate in research where I am specifically advising on virtual communications. I suggested we set up a YouTube channel or utilise a pre-existing channel for UHSussex to post promotional footage which is already being created across different projects on the topic of participation in research. This would keep the clips and footage organised, easy to access and share, and also discoverable online.

I am currently leading on another project spanning summer 2025 investigating why trans, nonbinary, and/or intersex people may not participate in women’s mental health research. This project will be using creative methodologies to explore personal experiences of mental health care and research in Sussex. (more information to be shared at a later date) If you would like to participate in this study, please fill in the early interest form.

I am also assisting on a project, on a monthly basis, run by Katie Munday (of Autistic and Living the Dream) on Exploring Trans and Gender Diverse Autistic Adults Experiences of Health and Social Care Inequity.

Prior to my more official experience, I have been reading many research studies and creating resources in plain language (both written and video format) to help newly diagnosed patients feel more informed and make it easier for them to explain their health conditions to loved ones. One of my main pieces of work was an introduction to Takayasu’s which I have now created in both written and video format.

I am interested in how we can involve people with lived experience in research. Many people in my communities (especially those that overlap, as intersectionality is still often not included in research projects) feel that much of healthcare research focuses on the wrong thing (i.e. curing autism rather than understanding it) and there is a lack of support in healthcare for these communities. I’d like to see lived experience included from the very start of research projects and included all the way through, from having early discussions with people of the lived experience being studied and what they want to see/what they think of the initial research ideas, to having lived experience researchers and consultants included throughout the process. 

I would also like to see better inclusion of access needs being considered and met. This varies from person to person, disability to disability. I would like to see this implemented for both the participants and the researchers, as without adequate adaptations it is impossible for many people to participate. This includes the continued consideration of COVID precautions, and precautions around other viruses as studies show the long term effects of repeated infections can be life destroying for anyone but especially those who have compromised immune systems (such as those with HIV or people on chemotherapy, biologic medications, and/or steroids).

I would like to move into a more central role in research studies of interest (including clinical such as finding or understanding new options of pain treatments, treatments that could lessen the severity of autoimmune conditions or cure them, and studies into treating hEDS) but I am also interested in less involved roles to consult on projects and continue to provide feedback throughout the process.

If you are looking to work within these areas and would like to hire a freelance community researcher to support the study in some way, please get in contact with me via Linkedin.