Understanding Patient Data
Client: Wellcome Trust
Date published:
We conducted a multi-stage public engagement project to learn from members of the public and healthcare professionals about the barriers and concerns around health data collection. The project focuses on engagement with black and South Asian members of the public across the UK to understand their perspective on what leads to incomplete data collection and capture peoples' views of data collection and use.
We have trained 6 Community Researchers in our basic research and engagement training package, which includes training in basic research skills, community engagement skills and safeguarding (and more). Each community researcher engaged a minimum of 20 people in their local community on the topic of health data collection.
This is a great way to gather insights on the sensitivities of this topic and we have found it is a great way to gather authentic evidence, especially from those who traditionally do not participate in research. Alongside this, we did 10 exploration labs with diverse groups from across the UK to explore some of the themes in more depth. Our findings will contribute to a roadmap for the healthcare sector to bridge the lack of trust that ethnic minority communities have towards the system and tackle the barriers they face when using it.
Check out the video we made to showcase the findings!