Tackling healthcare inequalities: The Dark Matters Database

While the ongoing Covid-19 pandemic has thrown light on how social inequalities affect health outcomes, less attention has been paid to broader, systemic disparities in medical care. By establishing an online portal that documents under-publicised illness presentations in marginalised genders and ethnicities, Imogen Malpas is working to counter this injustice. She and Markus Overdiek talked about The Dark Matters Database.

What was your motivation to start “Dark Matters Database”?

I learned about health inequity and the disparities that still exist in United Kingdom (UK) healthcare and across the world both during my studies and through personal experience. One striking example is that of medical student Malone Mukwende who, as a medical student, wrote the first-ever UK handbook that focused on the appearance of skin conditions on darker skin. I wanted to develop a tool which would actively help people from marginalised ethnicities and genders to advocate for themselves in healthcare settings, as well as to help clinicians provide more equitable treatment.

Could you tell me more about the current status of your project?

At the moment, I’m working on building the database and a website for it. With a team of designers from backgrounds that the database seeks to reach, I’m seeking to implement UX design which is actually helpful for people using the site. I have experienced discrimination within the medical system as a woman — but I am white and I don’t understand from a personal perspective the intersectional experiences of people of colour and/or people who, for example, are non-binary. The team will be able to establish the database and its website in a way that is most useful for the people it’s designed to support and that doesn’t cater to my own biases.

What do you think is the societal consequence of these overlooked illnesses?

Even in countries with a high-quality public healthcare system, such as the UK, many people still put off seeking medical treatment. They worry that they will not be taken seriously, or have anxieties because they or their peers haven’t been taken seriously in the past, or have even been harmed in their attempts to seek treatment.

That’s incredible, considering the resources we have available in the UK and yet people are avoiding accessing care because there’s a barrier at the point of consultation. This is rarely because staff members are ill-intentioned and want to create this barrier. It’s more often a lack of awareness due to incomplete teaching practices. This leads to a lack of understanding about existing inequities when it comes to how conditions can present differently in women, people of colour and transgender, non-binary or intersex people as compared to white men.

Thinking about all the situations in which people are not able to seek diagnoses or have not been given diagnoses, this means that thousands are not receiving the treatment that they need and deserve, and are suffering ill-health and death as a result.

Building a publicly available database about illnesses is in itself of great value. How would you like to raise public awareness for it?

Public health campaigns often fail to focus on underrepresented groups or do so in a way that doesn’t take into account cultural differences or well-founded historical mistrust of medical institutions. While it is the job of doctors to make the diagnosis, it helps a lot if as a patient you have the language and tools to help you advocate for your own healthcare outcomes and push for your symptoms to be taken seriously.

So in terms of public awareness, I would like to create a series of posters that are designed to mimic a public health announcement, with bold messaging and clear imagery. However, these posters would specifically focus on communities that are marginalised. I will also gather and publish statistics and interview-based data about inequalities in the healthcare system as an academic paper, which will form the third part of this project.

What challenges do you see when working with a lot of personal data?

The database is only useful when people submit to it. That’s why it is important that people feel safe in doing so. And while all the data is anonymised, I want to make sure that it is not exploitative of people’s conditions. All information gathered on the database will be publicly available for the benefit of marginalised communities worldwide.

It’s very important to consider precisely how to deal with personal data when you think about how easy it is to trace someone’s identity back from data points — even when anonymised. That’s why I don’t want to collect more than three characteristics: age, gender and ethnicity, with age being an optional addition. All images will be stripped of metadata. It’s very important here to be clear that what I am doing is not about collecting people’s medical history. It’s not that I want submitters to divulge all details — it’s about gaining very specific knowledge that can aid other people having similar health experiences.

For example, there exists lots of clinical literature about women who are suffering from symptoms arising from physical manifestations of psychological trauma or illness. Yet many of these women are simply told to shut up and get on with it. They shouldn’t express how they feel because society says that the role of women is to be quiet and compliant — an effect that is often compounded for women of colour.

That’s why the interview-based element of this project is so key. From these interviews, which will be conducted by individuals from marginalised genders and/or ethnicities, it’ll possible to find out more about the point at which treatment fails and people become so disillusioned drop out of the system.

Going a little broader now: Do you have visions for digital futures which are more just and equal?

The digital world is about power and attention, and there is so much power in attention. That is kind of the reason why I am trying to effect change — even if at a very small level.

When I think about digital futures more broadly, my interest is definitely centred around privacy, and the rare, non-commercial corners of the internet that are becoming so much more attractive. Places where people can rest and where they can make safe, fruitful connections on an equal footing with each other. These places are extraordinarily few and far between.

I think there is so much potential good online and in technology. Instead of that power remaining concentrated in a few hands, I would like to be part of a movement where people can equally share in those opportunities.

What things do you take away from the fellowship?

The fellowship is the best thing that has happened to me in a long time. For one thing, it’s giving me the ability to take a week every single month to work on my project, which in itself has completely changed and restructured my daily life. The support from The New New team, whom I can easily contact, is wonderful. Essentially, the fellowship provides a clear and supportive workflow which I really appreciate. Also, to learn how other people build their projects is extremely valuable. That everyone comes from such different backgrounds, cultures and countries is a huge benefit, and it’s humbling to see how people are dedicating themselves to these very important projects. Last but not least, the fellowship helps me keep focused on my ultimate objective — to help marginalised people advocate for their own health. Meeting all the other fellows reminds me why I am doing my work in the first place.

Building inclusive and just digital futures