'Self-portrait' makes medical record understandable for children

"When you talk to parents about their child's diagnosis and treatment, you miss the most important player," says Dr. Marie-Lise van Veelen. She is a neurosurgeon and initiator of the Children's Brain Center at Sophia Children's Hospital. That institute is developing the Children's Brain Lab, a circuit in which all kinds of aspects of brain function are measured in children with brain-related disorders, such as developmental disorders, spasticity, spina bifida, epilepsy and autism. "Patients sometimes have remarkable insights and information that is good to include in considerations. In addition, treatments often succeed better when children feel involved from the beginning."

Meaningful

Van Veelen sought contact with Mathieu Gielen of TU Delft's Faculty of Industrial Design. "They indicated: for a different color on the walls you should go to a styling agency. Their approach was: how do we make this meaningful for children?  How can we use the Children's Brain Lab to help children develop a stronger self-image? I immediately sat up straight. This was a whole other dimension which I had never thought about. Talking about convergence!"

Gielen came up with the idea of considering the data as a kind of self-portrait, where children can decide for themselves what they think is important and what they have questions about. Graduate student Paul Meulendijks developed a concept for the self-portrait with both physical components and a digital app. The Erasmus School of Health Policy and Management was involved in the development of such an app. With the grant from the Open Mind call, ESHPM appointed junior researcher Loes Tielen to develop a prototype in three months’ time.

Photobook

Loes Tielen first talked to stakeholders from the three universities, and then with children from the target group and their parents. Through an iterative process, she arrived at a prototype called "My Self Portrait”. It consists of two parts. On the one hand, there is a booklet explaining the workings of the brain and the lab, which children can use to get an idea of what's in store for them. On the other hand, there is an app.

Tielen: "They use it both at home and in the lab itself. There is an explanation of each room and children can record video’s about what happens in each room to watch back at home. Afterwards, the results appear in the app in a fun way, with parents able to screen what they do and don't want the child to see. Then children can make collages with the videos, photos and results they find interesting. They can also add questions to the doctor. If the parents and the child want so, the collages can be shared with the doctor prior to the interview. Over time, the children thus create a self-portrait, a kind of photo book about their time in the hospital."

Energy

The children responded enthusiastically, and the involved researchers from the various universities are also enthusiastic about the prototype. Dr. Petra Porte of ESHPM: "Challenging in this project was that the three universities each speak their own, different language. ‘Value-driven care' and 'making decisions together' have a very different meaning in the hospital than at the university. It gives a lot of energy to bridge those differences, because you then come across all kinds of new ideas and views." Gielen agrees: "Driven by this question, we gained insight into how much expertise there is in other parties and how much is possible if we integrate those expertises properly. In healthcare, we can do a lot of innovative things with that."

Thousands of children

The next step is to test the prototype and develop it into a working app. Marie-Lise van Veelen: "If we manage to make the Self-Portrait attractive and roll it out to other hospitals, we can eventually help about thousands of children. That's the goal. Because it would be fantastic if all those children feel involved and think along about their treatment."