Making it Easier for Researchers to Access Health Data

Norwegian health data is referred to as a gold mine for research and medical quality improvement. However, complicated regulations, many managers and cumbersome access processes make it time-consuming and difficult to access the health data.

What if we, by making a joint application process, could improve collaboration cross actors in the research sector?

Together with The Directorate for e-Health we created a gathering point for everyone who works with health data. The service provides a good overview of what data is available, what they can be used for and how to access it. This has changed the way the health research sector works together and created new arenas across organizations.

Opportunity
Today, all health registries have separate application forms. The project’s goal was to simplify the application process and increase the application quality by creating a common application form so that researchers only need to apply in one place. With the goal of including over 200 registers with different missions, forms and ways of evaluating applications, the challenge was to agree on a common application form and a new work process that allows the applicant to apply for multiple registers in one place.

Outcome
Through collaboration and insight sharing across the Directorate, end-users and health registries, we made it possible for the actors to co-create a process everyone was happy with. We used user testing as an approach to frequently validate user needs and highlight the progress of those involved. The result is a comprehensive solution that not only provides the user with a simpler and better experience of filling out large and complex applications, but also helps registry managers and case managers to get more complete applications faster and to process them in a whole new way. This contributes to increased interaction and communication between the various players.

The value of design-led transformation

The Directorate for e-Health has as a social mission to create a simpler health system in Norway, and therefore initiated a project to make it easier for researchers to access health data.

Our design framework emphasizes a user-centered, holistic approach with fast iterations and trials. With a multidisciplinary team of developers and testers from Capgemini, we were able to create a service that delivered on both user needs and experience, solved organizations’ challenges and handled technical constraints.

An extensive insights phase was crucial to uncover the challenges that needed to be addressed. Although the scope of the project was only a specific part of the application process, we chose to map the entire user journey and interactions with the actors.

A need for guidance throughout the application process

By mapping the entire application process, from applicants exploring to receiving health data, we discovered that users needed a step-by-step guide describing the entire process with necessary contact points with all involved, not just healthdata.no.

Because of the complexity and number of actors the applicants must relate to, they often ended up in a loop where they were sent back and forth between several actors. We discovered that the root cause was ambiguity about the level of detail that the different actors needed, and that no one really took responsibility for the overall experience.

By observing and talking to researchers, we gained insight into the challenges they faced in the process of accessing health data. This enabled us to understand how we could create the most value for the users. Most of the forms for the different registry managers asked for the same in a slightly different way, which led to a lot of duplication for the users.

An iterative approach

Through many rounds of prototyping, user testing and different versions of the design, we continuously refined the solution, so that we were constantly creating greater and greater value for researchers, the Directorate of e-health and registry managers.

It was crucial that the registers themselves wanted to use the new service, and to ensure this we chose to start with the four largest registry managers, who also had the most comprehensive forms. A lot of work went into defining one set of fields that covered the needs of the largest registry managers and at the same time reducing the number of fields to only what was absolutely necessary to process the application.

A holistic approach

We created an action catalog with ideas on how to meet users’ needs and ranked the ideas according to their importance. This gave us and the customer the opportunity to plan different phases in the project and to always have the users’ needs as a guideline.

To ensure a holistic and recognizable expression, we spent time developing the visual identity and creating a clear design system for helsedata.no. We defined guiding principles for language and appearance, changed the information architecture to suit the new needs of the site, and created new icon sets and illustrations.

Continuing the journey

The new application was thoroughly tested and successfully launched in January 2020, including 47 data registers, with good feedback from researchers and we continue the work of further developing the service experience in order to reach our goal of better health in Norway.