Purple Scout digitizes the TEDDY-study for LUDC
Jonatan Elsgard, developer at Purple Scout.
An effort for diabetes research
LUDC (Lund University Diabetes Center) wants to solve the mystery of why only children suffer from diabetes. Purple Scout is developing the TEDDY portal – a digital communication center that not only makes their study more efficient but also builds the relationship between the research team and the experimental families. And when the study grows, technology must be one step ahead
”Many say that we have come a long way in diabetes research. I think we should have come further.” Those are the words of Åke Lernmark, professor at Lunds Universitet. Since the 70s, he has spent his life studying diabetes in children. Today he is an initiator to LUDC and responsible for a number of international studies that successfully take steps in the right direction. Purple Scout is by his side to develop digital solutions that carry the research forward.
From Skåne to the US
What started with experiments in the lab grew to a clinical study where newborns were systematically screened in the hunt for diabetes predisposition. The number of screened children increased, multiple clinics in Skåne were invited and the study was named TEDDY. That’s how the American National Institute of Health got its eyes opened, and then the study grew even more. Today, in addition to the three clinics in Skåne, the TEDDY study includes clinics in Germany, Finland and the US.
– When the study grew and fundings increased, the team grew. More researchers and nurses needed to cooperate. So we took in dietitians and more laboratories. Above all, the number of children increased from a few hundred to several thousand, explains Åke Lernmark and points out the importance of meeting rigorous demands of confidentiality.
Digital communication center
The administration that earlier was handled with clever binder systems now required guidance. LUDC needed assistance with creating a digital booking- and calendar system that also could manage different test results from the labs. An easy-to-use online service that made it easier to keep track of every child in the study during their first 15 years of life – and protect their personal data.
Åke Lernmark describes the challenge:
– Every patient visit has a window of one month. If we fail to book an examination during that time we lose the chance to continue following the child, which is a disaster. The system needs quality safe booking routines, we have to see the closest clinic for each family and be able to send automatic SMS reminders before visits, says Åke Lernmark.
– Every nurse in the TEDDY study is specially trained, he continues. That’s why we can’t use substitutes in case of illness or holiday. We have to borrow employees at the various TEDDY clinics, which is also something the system needs to handle.
Purple Scout’s mission is to assist LUDC by developing the TEDDY portal. The solution is a digital communication center that gives all involved clinics a full overview and control.
Consultants from Purple Scout have been able to contribute with important technical competence in the research project.
It has meant a unique opportunity to run interesting development work with something that feels important – to prevent diabetes in children
Jonatan Elsgard, programmer at Purple Scout.
Open Java solution
The TEDDY portal is basically a Java solution on a Tomcat server. The open choice of technology creates the conditions to develop exactly the functionality LUDC demands. Something particularly valuable given that the portal, in addition to all the administrative functions, must be able to handle personal data strictly regulated by the laws of the EU.
A challenge was, for example, to create an easy-to-maintain but also secure two-party login. Here, we chose a specially developed solution that combines traditional login with a physical key, unique to every user.
Åke Lernmark thinks that the dialogue with the nurses and dietitians that use the portal has been crucial in the developing work. Someone that he wants to bring forward as an important strength in the collaboration with Purple Scout.
– Purple Scout have taken their time to meet the people that will work in the portal. Several developers visited the clinics, sat down and listened. The nurses have had to explain how they want it to work, he says and points out that over 30 persons in his team are completely dependent on that the portal works.
– We have never needed to adjust after Purple Scout’s solutions. We tell them what we want, and Purple Scout creates solutions based on that. It has made our work much easier, he explains.
At Purple Scout, the technical sensitivity feels like a matter of course. Operative staff is always involved in this type of project. It’s routine.
At LUDC, agile system development is highly valued. The work is planned based on short two-week sprints (time interval), and at every sprint start it decides what’s the most important, has the highest priority and what gives the most value to bring the project forward. Åke Lernmarkt thinks it has worked very well.
– To us, individuals and interactions are always more important than processes and tools. Functional software always comes before extensive documentation.
Jonatan Elsgard at Purple Scout agrees completely that the work has worked well.
– To work agile gives the team responsibility and ownership over the product. On one hand, you get a clear priority list, on the other hand, there is time to quickly revise so that you do not have to live with old mistakes, he says.
– Above all, it will be a better finished product. He points out that although it’s a matter of taking three steps forward and one step back – that the result is always customization spot on!
Clear and strong project management has also helped to solve critical challenges along the way. One example is when Purple Scout, on their own initiative, contacted the Data inspection about a matter about personal data, an initiative that later became decisive for the continued work.
– Purple Scout came to terms with a legal problem that we did not see a solution to. It was very impressive! It’s willpower and a commitment we really appreciate, says Åke Lernmark and adds:
– Now we take it for granted..
A big technical challenge is that the TEDDY portal needs to live up to strict regulations about the management of personal data within the EU. This means that, for example, only controllers are allowed access to protected information.
A controller is a personal “doorman” between the subject and others involved in the research team. Every child receives a study-ID, that allows many people to work with the patient without seeing social security numbers or other private information.
– In the TEDDY study, it’s about nurses in close contact with children for several years. Thanks to Purple Scout we have found a way to keep the number of controllers down to a minimum, says Åke Lernmark.
He explains that Purple Scout’s development of the two-parties login with a physical key – a, so-called, YubiKey – has been crucial in guaranteeing the confidentiality of the TEDDY portal.
– We think the login with YubiKey works fantastic! The key is personal and ensures that all logins are saved and can be tied to the right person reliably.
Jonatan Elsgard at Purple Scout explains the technology:
– YubiKey is a key that the user plugs into the USB port in connection with the login. A fingerprint reader generates an authentication code that is matched to an algorithm to secure the identity. This is an important part of the delivery because it’s about personal data that is not allowed to be hacked.
– LUDC can feel safe, and we can feel safe by delivering the best we’ve got, concludes Jonatan Elsgard.
The TEDDY portal is a digital tool that makes it possible for a few nurses to keep track of a large number of children. Purple Scout’s technical solution has not only been more efficient for communication. It has also created conditions to build a reliable relationship with the children in the study, with loyal families as a result. Of all the countries in the TEDDY study, Sweden is the most successful.
The next step for LUDC is to create a CAP portal (Center for Autoimmune Prevention), an umbrella portal that, in addition to TEDDY, will accommodate multiple studies in the same area. The aim is to get even closer to the answer to the question of what it is that triggers diabetes. The new portal comes, of course, with a long wishlist.
– In the development of the TEDDY portal, the staff has been involved since the beginning. It will be important in the next phase as well, says Åke Lernmark and concludes:
– Diabetes research is both important and exciting, I will not give up!
And Purple Scout is, as always, ready to deliver technical answers, professional tools and everything else that is needed to support an enthusiast.