"People who use Elsa should feel that they are contributing to research"

"People who use Elsa should feel that they are contributing to research"

Sofia Svanteson started working on the idea which eventually became Elsa seven years ago. The aim was to make the latest research available so it could benefit those who needed it most: patients. Here she talks about the challenges of persuading people to change their habits and the future of Elsa.

How did the idea for Elsa come about?

It has been growing for quite some time. I had the opportunity to work with professors Lars Klareskog (rheumatology) and Lars Alfredsson (epidemiology) about seven years ago. They had started a foundation together with Professor Hans Rosling which they called Riskminder. The vision behind Riskminder was to "democratize scientific research", and spread important and meaningful discoveries to the people who need it most: citizens and patients! They understood that research would not be made available unless it was communicated with the help of modern digital design and technology, for example through websites and apps. Because not many patients read scientific publications. The design agency I operated at the time, Ocean Observations, was commissioned to produce suggestions about how such services could look and work. The purpose was for users to understand how lifestyle habits and medications affect disease symptoms and health.

How did it happen?

The first prototypes I showed at various healthcare conferences received very positive feedback. Caregivers as well as patients, relatives and pharmaceutical companies all asked where they could access these services. The problem was that they were just prototypes on my computer, and they could not be used by the public. But their questions were important evidence that we were on the right track, and that we should target our efforts on realizing the vision. We started the Elsa Science company and began building the first app for people with rheumatoid arthritis, working with patients, healthcare providers and the industry. So far we have not had time to apply much actual research data in the app, but it is underway through several different research projects we are participating in.

What are the challenges? What's the most fun?

Building a service that will help people with behavioral change is one of the most difficult challenges there is. By their nature, people prefer not to change behaviors. First of all, we have to get people to start using our app (which is a new behavior), and then we want to get people who need it to change their lifestyle using the app (another behavioral change). It requires diligent work to understand how to reward a user: how can the app give something back? But then we come to the fun part; working with the patients! We need to understand their needs, motives, interests, behaviors, thoughts, and feelings in order to build meaningful functions that reward them as individuals. Everyone is different. Meetings with patients in interviews or workshops are absolutely fantastic, although their stories are often sad - it’s amazing how tough things have been for them.

How would you describe Elsa?

We are not quite there yet, but I want it to feel like a friend you can hold in your hand and get continuous guidance if you need it, or someone who stands a bit at a distance and just peps you up a little now and then, depending on your needs. Regardless, Elsa must be able to come to terms with the individual's conditions. But it is complex to be so relevant in that way. It takes time, and we have some work left to do.

What will Elsa look like in the future?

Today we are focused on rheumatoid arthritis, but I hope we will have the opportunity to work with more chronic diseases. I also want people who use Elsa to feel that they are involved and are contributing to research, that their participation and use of the app is of great importance and can help others in the future.