Running trauma-informed user research to elevate the voices and experiences of people with sickle cell disease by Connie van Zanten (Public Digital)

In 2022, Public Digital partnered with the NHS Race and Health Observatory to understand the experience that people with sickle cell disease have with healthcare services in the UK. We were looking specifically at their treatment and interactions within the healthcare system when they are having a sickle cell crisis: a symptom of sickle cell disease which is characterised by an acute painful episode that can last for weeks at a time. According to the National Institute for Health and Care Excellence, there are between 12,550 to 15,000 people with sickle cell in England and globally, it is the most common and clinically significant inherited blood disorder. It occurs predominantly in people of African and African-Caribbean origin; approximately 8% of individuals of African descent carry the sickle cell gene.

Our goal was to identify ways in which digital interventions might improve their treatment and interactions with the healthcare system, and our intention was to centre and elevate the voices of a community of people who are routinely dismissed and treated without compassion or respect when they are in excruciating pain due to systemic racism.

To do this, we conducted user research with people who have sickle cell disease and asked them to share their experiences with us. In this talk, I will share practical tips about what we did to make sure our research was kind and compassionate, and to reduce any chance of further harm to our participants. I will also share what we learnt, and what we’d do differently next time.