Discovering user needs for Cancer Data with the Public Health England NCRAS team
Oct. 25, 2019
Last week we held our first show and tell with Public Health England’s National Cancer Registration and Analysis Service (NCRAS). NCRAS do an amazing job, aggregating data of every cancer case across the NHS and the patient’s subsequent health history. Incredibly the roots of this go back to the 1950s and as a result, NCRAS curate a world leading set of cancer records, with a number of data analysis tools built on top of it including CancerData and the cancer statistics on PHE’s Fingertips site.
One of NCRAS’ overarching goals is to promote the use of this data to improve patient outcomes and influence policy. The purpose of our project is to build understanding of the needs of users (and potential users) of this data so that NCRAS can position their services in a way that maximises its impact. In our kick-off session with the NCRAS team we dug into the ambitions of the team in more detail and identified a series of goals, that we could assemble into something resembling a theory of change.
A wide range of user groups are potential users of NCRAS data, with 12 personas identified in the workshop. We need to narrow our focus for discovery and we identified five priority groups that we felt would have the greatest impact on NCRAS’ overall goal; Commissioners, Clinicians, Charities, Academics and Patients.
We’re quite early in the research process, having only spoken to the NCRAS team and retrievers of their data that they have put us in touch with but are slowly getting our heads around the dizzying array of acronyms in use within PHE and the NHS. We’ve seen some themes emerge from these interviews and it will be interesting to see how much they are replicated across the different user groups over the next month.
Next blog: A look at the output tools NCRAS currently provide to their users.