Photo: Silje Katrine Robinson, DOGA and Eivind Senneset, Neuro-SysMed

This is the second award Van den Hooven receives for her work on designing tools to express pain. Last year she also received the DOGA newcomer award. In 2019 she came from Canada to Bergen, where she created her own pain laboratory, Open Pain Lab.  To the pain lab she invited people with pain experiences and professionals in medical science and healthcare to interviews and workshops.

– Words are often not enough when people have to describe both physical and emotional pain. In contrast, there are many who manage to express themselves with the help of tactile and visual things. This led me to design an interactive toolbox full of objects that help people articulate the pain they experience, she says.

What does pain look like?
The Canadian designer explains that the design process on communicating pain began by holding workshops where she asked participants to mould their pain in clay. 

–This is where I first learned the power that objects have in bridging the communication gap. The unique forms helped people express what they couldn’t with words alone, Amy Van den Hooven says. 

It was during Van den Hoovens master's at the Department of Design at The University of Bergen that her project started.

– In my project Re–Imagining Pain Communication, I wanted to see how design can help improve the way we communicate pain. The DOGA–award, and international recognition, is of course a bonus, but it is not about the prizes. I am very passionate about this work. To be recognized internationally is confirmation that pain and suffering are aspects of life that we need to better understand. Signs that show how important this work is, are the opioid epidemic, escalating mental health issues and the increase in chronic disease, the designer says.

Has worked across disciplines
She is particularly happy about is the fact that DOGA highlighted the innovative aspect, because the Open Pain Lab is very much about involving many people in the design process. When I started the lab, working in a cross–disciplinary mode really interested me. We are now testing the tool kit with gastroenterology patients and with researchers and medical professionals that work at Neuro-SysMed.

Van den Hooven stresses that everyone has had pain in some way and that it is a subjective experience that is difficult to explain to others. – Within medicine, there is often a desire to objectify something that can’t be captured in a 1 to 10 pain scale, she says, – but pain involves a complex story.

The Canadian designer was herself diagnosed with an autoimmune disease at the age of 19, and this experience, she says, motivated her to use her design profession to help others with chronic pain.

– My experience of living with pain, and knowing how difficult it is to explain to others, has been very valuable

Worked with homeless people
Before coming to Bergen, she did her BA in environmental design at The University of British Columbia in Vancouver where she studied a mix of architecture and landscape design. – I was always interested in designing spaces, and in my BA I designed a therapy and refuge space for women that were homeless and suffering from abuse. I worked in a notorious street in Vancouver, Hastings street, known for a huge number of homeless people. I worked as a homeless advocate and social worker. Through my work I saw a lot of pain and addiction and heard a lot of stories of what these people went through. 

At the same time she met with the health care system, through her own issues with pain. This made her discover that there is a gap between mental health and somatic health, and the ability or willingness to express the complexity of the pain and suffering that one is experiencing. 

– When my sister was also diagnosed with a similar autoimmune disease, I knew I wanted to develop my career connected to health and design. I wanted to do something meaningful that could hopefully help people in pain. When I applied at KMD, they were very open, and told me it was possible to pave your own way as a student here. This openness also led me to work in different fields of design and search for collaboration outside of design, in medicine and humanities.

Let the hands do the talking
According to Amy Van den Hooven professor in Arts Based Education, Cecilie Meltzer at Oslo Metropolitan University was an influence on my work and interest in objects – She said something that has become important in my work, namely that in art therapy you let your hands do the talking. When it comes to pain there is often a lack of words, a lack of safety.

– In the workshops, when I asked people to express their pain in clay, many made their pain like a monster or they treated the clay like it was their pain, for example some would squeeze or pinch the clay. It’s amazing how looking at the pain object can help people understand their experience better, through seeing it from the outside for the first time. I also designed objects that represent different needs that people have.

Patient narratives
Van den Hooven is now working with both healthcare professionals and Mia Lastaad Bjørlykke, medical student at UiB, to further test the toolbox in two projects Gutsy Objects and Reflect Project with Neuro-SysMed at Haukeland University Hospital. She is also hoping to apply for a ph.d.–degree.

You are working together with researchers very different backgrounds, from medicine, via humanities to design. How do you work together?

– It can take time to understand how to communicate with people from different disciplines and to understand what role each person can play in a collaboration. Input from different fields is essential in how to proceed further. In working together with Neuro-SysMed at Haukeland University Hospital I will be testing the tool kit and developing workshops and communication tools. I am interested in the patient narratives and want to bring this into the way we practice medicine. 

The Clinic of The Future
– The project that I am excited to be developing next in the Open Pain Lab is the concept of The  Clinic of The Future. I would like to continue to re–imagine health practices and experiences to be more focused on the patient and their stories.

Van den Hooven is also working on creating collaborations in Canada. She is in touch with Emily Carr University of Art, Wilson School of Design and Simon Fraser University in Vancouver, as well as University of Michigan Stamps School of Design and authors of Discursive Design. – Their methodology and research has had a great influence in my design work.