Open Design and Cystic Fibrosis: Enabling Participation in the Design Process

This paper describes the results of a project to collaboratively design a medication
dispenser using open design. This work explores the benefits of open design
(open-source design) in the conception (and development) of medical products.
Described here is the first attempt to tackle some of the issues facing the implementation
of open design in the field of medical product design where a recognised
move to ‘open’ working practices & innovation is needed (Barrett, 2010); as is
the imperative to more fully include users in the development process (Karlsson et
al., 2011; Martin & Barnett, 2012; Money et al., 2011; Owens et al., 2011; Shah, Robinson,
& AlShawi, 2009). There are moral and pragmatic reasons to include people
in the design process (Carroll & Rosson, 2007), especially true for medical products.
Presented are the results of online collaborative design work with a geographically
diffuse group of people with Cystic Fibrosis; the prototype, and the open design
implementation developed and used.
Figure 1: Medication dispenser; one of the open-source medical products developed
The project prototyped a wholly virtual meeting of people, empowering them to
conceive and develop their own products based on their own lived experience of
Cystic Fibrosis. The project involved the development of a community of people
with Cystic Fibrosis, supported through tools and online workshops with a designer,
within an Action Research methodology. It is expected that open design has a
positive contribution to make in the field of medical product design more widely,
despite the very real questions surrounding its implementation. This research
demonstrates the benefit open design can bring to (in particular) early stage
concept generation, as well as continual evaluation and the fostering of innovation
by leveraging the knowledge and action of lead users (Von Hippel, 1986). However,
also included is an analysis of the regulatory, implementation, and economic factors
that pose challenges.

D4H2013