Making cancer datasets more accessible

The challenge

Over 20 years, NCRAS had experienced rapid expansion, drawing from an increasing number of data sources. This led to increased demand on analysts to make sense of and share data, as well as increased demand from stakeholders as NCRAS’s visibility grew. At the time of our work, NCRAS was not yet part of the National Disease Registration Service, and their data was made available through many different interfaces depending on the particular needs or focus of the data users. This led to a fragmented online presence, making it hard for stakeholders and internal staff to find the data they needed.

Unboxed worked closely with the Product Owner at NCRAS and her team to map NCRAS’s complex data landscape and research the needs of their stakeholders. This kickstarted a transformation process that would make cancer data more discoverable, accessible and easier to navigate.

Our approach

The study of cancer and development of cancer care involves a vast range of stakeholders, from individual patients, their families and representative groups, to specialist clinical teams, scientists and researchers. These people have very different levels of confidence in understanding and handling data, as well as different needs in terms of how data is presented to them.

We started with a review of current interfaces - different websites that had been built on top of specific datasets. We interviewed 34 stakeholders, both face to face and over the phone, to understand what they found difficult about finding and using the data. Alongside the NCRAS team, we mapped their current technology set up - where data came from, how it was managed and where it was shared.

Through several synthesis sessions, we reviewed insights and developed a series of personas to help us explore the needs of different stakeholders: commissioners, charities, clinicians, patients, academics. These personas prompted thinking during a co-design workshop, where we collectively explored ideas for transformation.

What we learnt

One of the key things we learnt was that people come to NCRAS data with very different mindsets. Some are ‘pin-pointing’, looking for specific data which they expect to find quickly. If they can’t find it, they may well give up.

Others are more ‘openly exploring’. They’ll have more time and patience to look for a wider breadth of information. They may have more confidence to explore different data tools and have more experience in analysis.

NCRAS wants to push relevant, timely and accurate information to all stakeholders. Understanding these very different mindsets was important to inform content and user interface (UI) design, as well the information architecture (IA) of a future home for cancer data.

The outcome

While there were some exciting opportunities for change, we recognised that NCRAS would not be able to take on all of these in one go.

Working with the NCRAS team, we grouped ideas into:

Fundamental to both of these approaches was a focus on a better UX (user experience) for cancer data, where the digital journey is tailored to the mindset and needs of each stakeholder group. We also recognised that any future interface needed to promote NCRAS as a trusted brand. NCRAS wanted to reach out and make people aware of new data opportunities, rather than waiting for people to find them.

Iterative changes included:

Our recommendations for larger scale innovation opportunities included:

Beyond the project

Following our work, NCRAS developed a series of prototypes for a single point of access website and tested these through an Alpha process. After iterating the site based on feedback from the Alpha, they then moved into a Beta phase, eventually migrating all legacy sites to CancerData.

NCRAS followed the Government Digital Service Standard (GDS) for service design discovery, putting human needs at the heart of the process. They went on to pass a GDS Service Assessment. The new website is designed to deliver a better experience to users that will ultimately result in data sets being used to inform better diagnosis, treatment and care of a wide range of cancers.

This project was a great opportunity to take a user centred approach to something that had previously focused on gathering and processing data. At Unboxed, we’re strong believers in the power of open data, and we love the opportunity to find ways to unlock data that can change lives.