Black Lives Matter
But in the time of Covid-19, we’re reminded that Black Lives don’t yet Matter in health care. Black Americans are 3x more likely to die of Covid-19 than white Americans, and black British are 2x more likely to die than their white counterparts. The UK Government’s decision to group together BAME communities with Gender and Obesity in a (delayed) report on Covid deaths further speaks to the low-value placed on black lives.
We still don't have national data but in city after city the pattern is clear: pic.twitter.com/oMvRZYC4dx— Mona Chalabi (@MonaChalabi) April 10, 2020
Being anti-racist is an active pursuit
It requires personal work, professional work, and organisational work – each of which are a flavor different from one another but all ladder up towards a shared goal. We’re privileged to have worked with some of the most respected healthcare organisations in both the UK and USA. We apply anti-racist design thinking to our work at an individual- and organisational-level (more details coming soon).
I’ve shared insights we’ve learned along the way:
When you design and build from a default-white perspective, you design and build a default-white product
Designing and building for health data is hard. People are understandably sensitive about how health data is collected, used, and shared. Plus many existing health tools, like polygenic risk scores, are biased against people who aren’t white.
Products, services, tools, and platforms built with and for health data must consider the design and technical needs of different stakeholders, but because we too often design and build from a default-white lens, we deprioritise features like these below that address the needs of people who aren’t white:
- culturally-competent consent. The European standard for consent is individual consent – like you see with cookie banners on websites. This is applied across products and industries to gain valid consent. However for British participants who are Muslim and need religious approval for valid consent, how would you design and build for this consent need?
- third-party auditing access for journalists, consumer advocacy or watchdog groups. Existing data platforms are walled gardens by choice. However for British participants who are black and whose concerns are about institutional distrust and embedded racist practices, how would you design and build for data transparency and accountability?
Measuring representation is good. Until it compromises people’s privacy
The need to measure representation must be balanced with the cost to people’s privacy. In order for an organisation to measure representation, it must collect data about race and income, amongst other sensitive lifestyle information. Historically, people in power have used this kind of data to affirm systemic bias.
Are you using anti-racist design thinking in your work? Let’s swap notes.
Want to start using anti-racist design thinking in your work? Let’s talk.