Database of Us

#healthequity #healthadvocacy #darkmatters
Imogen Malpas

The Database of Us (Underrepresented Symptomatology) is a collaborative online portal documenting under-publicised illness presentations in Black, Indigenous and People of Colour (BIPOC) and marginalised genders. It is built on crowdsourced symptom information in the form of text and/or images from anonymous submitters around the world, and will serve both as a diagnostic aid for clinicians and as a self-advocacy tool for these groups.

What will you be working on during the fellowship?

This fellowship will allow us to complete our current work with individuals and communities to
establish the most commonly overlooked illness presentations in BIPOC. In consultation with these groups, we will run a preliminary public awareness campaign, develop the database framework and launch it for testing. We will then open it for crowdsourced input which will be backed up by images and/or text where necessary and subject to ongoing, professional review. We aim to use this fellowship to expand the focus of the database to cover as many illnesses and conditions as possible – for example, maternal and gynaecological conditions, paediatric conditions including developmental delay, chronic illness and disability-related symptoms.

To what future do you aspire?

BIPOC have lower access to quality healthcare, poorer general health and worse disease outcomes
than the wider population. This is in part the result of systemic clinical bias, which generates lower medical awareness of illness presentations in BIPOC, and lower public awareness of BIPOC-specific symptoms both within and outside of BIPOC communities. Our aim is to work with BIPOC worldwide to create a uniquely inclusive health database. With technology on our side, we can bring into being a future where all bodies are treated equally. By empowering individuals and communities to understand and share lived medical knowledge, and by increasing awareness of BIPOC symptomatology among clinicians, this project hastens that future.

Tell us about yourself. What motivates you?

I’m a medical anthropologist, journalist and photographer dedicated to improving health equity.
My past projects include a collaborative offline database of young peoples’ mental health during Covid-19, an online zine that platforms expressions of resistance called HOW 2 B BAD, the Lost Words Project with The Flute & Bowl collective which documents climate-related words cut from the dictionary, and a TEDx talk on time-space synaesthesia. My principal collaborator on the Dark Matters Database is BBC filmmaker and Black health activist Jameisha Prescod, who documents the challenges of living with chronic illness. Jameisha’s help in creating a network of individuals with lived experiences of misdiagnosis and medical neglect is invaluable.