How can we build better data connections?

There are currently as many different data systems in the UK as there are hospitals: most hospitals across the country have multiple systems, all storing different information, and frequently unable to talk to one another.

Organisations such as Blood Service have information blood donors, but this is not currently linked tohow well a person receiving that transfusion went on to do.

We want to create better linkages between systems, so that researchers and doctors can ask important research questions, and design software which can manage the distribution of blood from donors to patients in a better way.  Better linkages will also help people with rare blood types or complex diseases (like sickle cell disease) to receive better matched blood.

Working with data like this is complex, and being aware of the wishes and feelings of the people who are the source of this data. This part of our research programme therefore has a particularly strong focus on public and patient involvement and engagement; we want to make sure we hear from people  who are more affected by these decisions. This includes reaching out into communities who have previously been underrepresented in the research world, to answer their questions and gain a full appreciation of how they feel our work ought to be carried out.