Māku – a wearable for at home clinical trials with boys and men with Duchenne Muscular Dystrophy
Project Māku gives the patient a central role in its own medical research. A wearable enables at-home clinical trials in which the patient get insight in the collected data during research.
The project is a collaboration between design studio Ann.ID, Medtech startup Yumen Bionics and de Samenwerkende Spierfondsen.
Clinical research is essential for the development of new treatments for people with a chronic (muscular) disease. However, trials are tough: Many visits to the hospital, exhausting testing and emotional tension for the results. It’s not only taxing for the patient but also for accompanying relatives.
The effects of the COVID-19 pandemic, creates a need to reconsider the current way of clinical research: moving it to the home environment.
What if we can’t see any patients in the hospital for the upcoming 5 years due to COVID-19? We have to rethink the whole scenario of clinical research.
Phase 1 – Research: What are the needs of patients in clinical trials?
The project was selected in June 2020 as as one of the eight proposals for the fourth Open Call Fresh Perspectives of Creative Industries Fund NL. The goal of the first phase was to investigate how patients currently perceive clinical research and how we can create a wearable that matches their identity and needs during trials. We spoke with patients, relatives and physicians.
Unique to our approach was to bring early stage prototypes to our (digital) conversations. Since the concept of such a wearable is unknown to most people, these prototypes enabled the participants to understand the concept better and visualise how it would work in their lives.
In parallel, Students from The Hague University of Applied Sciences, faculty of industrial design worked on a platform of solutions on how to give the patients insight in the data in a meaningful way, without conflicting with medical research.
Phase 2 – Development of a system for at home clinical trials: A wearable and smart object.
In the second phase of the project, we will create multiple prototypes to design and validate the system with people with muscular dystrophy.
Functional prototype, that enables measurement of EMG-signals of the upper arm muscles and movement of the arm.
Look & Feel prototype(s), in multiple iterations we’ll collaborate with patients we’ll to create a wearable that matches their identity, makes them feel proud to contribute to the research and is comfortable to wear all day.
Interface prototype(s), to enable patients to be in-control during the clinical trial by giving insight in the gathered data.
What if we could first design a system of a wearable and interface that perfectly meets the needs of patients – and then ask medical specialists how we can adapt the existing clinical trial protocols to meet those needs while achieving their scientific goals?
Anneke van Abbema
Project Māku is a collaboration between studio Ann.ID & Yumen Bionics, supported by Samenwerkende Spierfondsen.
Winner of the Imelda de Groot Award
The ‘Dr Imelda de Groot’ is an annual award for an individual, group or institution for the best project or achievement in the field of rehabilitation (in a broader sense) for Duchenne and Becker Muscular Dystrophy. This award is an initiative of the foundation Duchenne Parent Project Foundation, the Netherlands. The winner, chosen by a jury consisting of experts, including patients, receives, in addition to the honor, € 10,000 to spend on this type of research.
5 experts from different countries chose project Maku from 4 great finalists.
In project Maku, a project in which Ann.ID and Yumen Bionics collaborate, with the support of the Samenwerkende Spierfondsen, the patient is central in the design process of a wearable for long-term clinical research, focusing on arm movement and muscle activity in boys with Duchenne.
Granted by Creative Industries Fund NL
An independent jury consisting of Martine Zoeteman (architect, chairman Dutch Creative Residency Network and advisor Raad voor Cultuur), René Post (researcher and entrepreneur on digital culture), Yassine Salihine (designer and lecturer design research KABK), Marieke Rietbergen (founder Design Innovation Group) selected project Māku as one of the 8 proposals from a total of 42 applications for the phase 1 grant.
The selected project of studio Ann.ID, lead by Anneke van Abbema, shows a practical design solution in which she will develop a wearable in collaboration with Samenwerkende Spierfondsen and Yumen Bionics that not only collects data for scientific research but will also look into a way to make this data valuable for the patient.
Creative Industries Fund NL
Beginning of 2021, funding for phase 2 of the project was granted.
User Experience (UX), Wearable Development, Prototyping, MedTech