The governance of design research in healthcare

In this paper, we review our experiences dealing with research governance
issues in healthcare. We indicate key ways in which creative and exploratory
design research can engage with healthcare organisations to overcome barriers
that limit the ability of both parties to realize the potential benefits of
design research.
A key lesson has been about the complex interactions between general ethical
principles as defined by a long history of ethical guidance in health (WHO,
2008) and the specific governance and oversight arrangements that apply
in our particular setting (DoH, 2005), namely an on-going National Institute
for Health Research (NIHR) Collaboration for Leadership in Applied Health
Research and Care, South Yorkshire (CLAHRC-SY).
Specific challenges in undertaking design practice and research stem from an
incompatibility between the iterative nature of design research and practice
and processes currently in place to approve projects. There is also the added
complexity of terminology, where certain processes are followed due to
classification of a project as ‘research’ (Brain et al 2013) as opposed to ‘service
improvement’ or ‘practice development’, regardless of the activity proposed or
the purpose of the project.
We will reflect on the wide range of different collaborative research, design
and service improvement activities we have undertaken and how we have
ensured the appropriate approval processes are obtained. These approaches
include classifying design research as service improvement/review activity,
as bench science and instances where design activity is provided as a service
developing an ‘intervention’ which is subsequently evaluated using traditional
research methodologies.
Design research in healthcare is an emergent discipline trying to interact with
historical systems set up for different purposes. We believe that over the last
four years we have developed ways to work with these systems that ensure the
balance between appropriate governance and the uniquely exploratory nature
of design is realised.

D4H2013

Interactive prototypes as props in workshops to trigger the design of services for dementia rehabilitation

It is known that physical training can help people with Alzheimer’s disease to
show less physical limitations and better motoric skills (Neeper et al. 1995).
Physical rehabilitation and exercises are included in the services offered by
most eldercare organizations. In the CRISP project (ten Bhömer et al. 2012)
we are developing new services for rehabilitation of people with dementia,
with a focus on the combination of textiles and technology. In a workshop
setting we used interactive prototypes to discuss the implications of embedding
these new services in the existing services of the eldercare professionals.
The prototypes helped to envision new scenarios and additional touchpoints
necessary to implement the new service. Further, the different viewpoints of
the eldercare professionals triggered new possibilities for the prototypes in
different contexts with different target users.
Figure 1: The workshop setting Figure 2: Future service by one of the participants
During the workshop, a design researcher, two therapists and a care manager
evaluated two prototypes (Figure 1). The first one was a shirt that design to
make rehabilitation exercises more fun by using sound feedback, for people
with early and moderate dementia. The second one was a blanket with
integrated vibration elements that reacts on touch and is used to trigger new
communication patterns between a person with severe dementia and another
person (partner, family or caregiver). The workshop followed the phases of coreflection
(Tomico et al. 2009) and consisted of a reflection part, in which positives
and negatives about the current prototypes where written down. During
the ideation part these were used as input to let the participants envision
and sketch out their future service (Figure 2). In the confrontation this future
service was brought back to reality by creating a requirements list for the next
iteration of the prototypes, and a concrete plan to test the prototypes with the
indented user group to validate some of the assumptions.

D4H2013

Designing out curative syringe reuse: maximising global acceptance and impact by design

Injections are the most common health care procedure performed in the
world and the most deadly. Each year clinicians administer 16 billion iatrogenic
injections using a pre-used syringe resulting in 1.3 million deaths, 26 million
life years lost and 32% of all new Hepatitis B cases (Hutin & Chen, 1999). Following
a global call by the World Health Organisation (WHO) in 1986 the autodestruct
syringe has since become a prerequisite device for all immunization
programmes (95%). However cost has prevented its widespread adoption in a
curative context (5%). Reaffirming absolute patient safety is illusory (Fischhof
et al, 1981). Our presentation (and exhibit) describes a two-year process to
develop an effective innovation and implementation strategy to contribute to
a global reduction in curative syringe reuse violations through design. This undertaking
involved precedent case studies, force-field analysis, and dialogues
with global networks and specialists. Our acquired knowledge base captured
Figure 1: Transforming syringe label exhibit, Design4Health 2013
the complexity of the challenge, sharpened the acuity of our strategic approach
and identified essential team competencies: high-level advocacy,
frugality, unilateral benefits (Howitt, 2012) and an acceptance for satisfice
solutions (Simon, 1959). The outcome is not a new syringe but a transformative
label that synthesizes theories of risk perception, chromism and visual design
(Fig.1).
A patented intervention that adds intrinsic value to any production syringe
thereby amplifying its impact to global patient safety: disposable, auto-destruct
or pre-filled. Marc Koska OBE Founder of the SafePoint Trust recognised
the significance of our condition-change feature, as a package sterility indicator
while transiting the supply chain and as a visual alarm indicating prior use
of medical devices to unsuspecting patients. Assisted by Marc Koska, a new
draft mandate that aims to outline future performance requirements for WHOcertified
injectable technologies now specifies our technological advance.
Project execution is now our primary objective.

About Us And Our Ideas: Young People (With Diabetes) Experiences Working With Designers

Young people can be engaged in the design process: as informants (Katterfeldt,
et.al., 2012); in making prototypes as a source of creative inspiration for designers
(Fitton, et.al., 2012); proposing design concepts in workshops (Glasemann
and Kanstrup, 2008); or designing via creative design activities (e.g. animated
scenarios) (Katterfeldt et.al., 2012, Iversen and Smith, 2012). Our study aimed to
evaluate the use of methods in co-design by post-project interviewing young
people (with diabetes type 1) designing innovative diabetes self-care service
proposals.
Ten young people (8 girls, 2 boys) mostly in their mid-teens (one 9-year old),
their families, a Diabetes Specialist Nurse and four design researchers participated
in eight creative workshops from July 2011 to May 2012. The 2-hour
workshops followed a process of sharing experiences and identifying relevant
issues, creative exploration of ‘blue-sky’ possibilities, convergence to practical
proposals and prototyping (Design Council, 2005). Popular cultural references
(e.g. Cool Wall, X Factor, Dragon’s Den, Wallace & Gromit) were used at different
stages of the design process to establish a design language (Sustar, et. al. 2013).
In interviews, the young people reported that the project enabled them to:
share their diabetes experiences with peers (for the first time, for some); to reflect
on their relationship with their condition; and to contribute ideas towards
final design proposals:
“It was good because it wasn’t [the designers’] opinion, we all had a choice and
they combined it [ideas] so everyone got involved.” (Young Person)
Designers have to use popular references with caution, as some might be boring
or misunderstood (e.g. Wallace & Gromit) by young people.
Through participation and ownership of outcomes these young people believed
they were representing other young people with diabetes more widely
and, consequently, influencing their own and others’ futures.

D4H2013

Interdependence between healthcare design and stakeholders: A designers’ view

The concept of ‘design quality’ during the design, construction and occupancy
phases of healthcare environments is complex. There are multiple stakeholder
groups (e.g. architects, contractors, the NHS, patients) with potentially conflicting
requirements interacting with each other during the project lifecycle.
There is a growing body of evidence demonstrating the impact of design
elements on medical and non-medical outcomes for stakeholder groups (Huisman,
2012; Macmillan 2006) and as a result, the need for the healthcare construction
industry to focus on design quality (Walker et al., 2009). This research
looks at this issue from the perspective of ‘stakeholder management’: a field
which can be used to analyse the attributes and interactions of stakeholder
groups.
A series of semi-structured interviews was conducted with eleven healthcare
designers and architects in the UK to explore their perceptions and experiences
of interactions with other stakeholders, and their opinions of design quality
within the healthcare design process. Based on the ‘stakeholder’ definition
(Freeman, 1984), a novel matrix exercise was used with the participants to examine
the two-way relationship between design quality and stakeholders during
and after project delivery. ‘Framework’ method (Ritchie and Lewis, 2005)
was used to thematically analyse the qualitative data. A conceptual framework
was then developed, which defined the design/stakeholder interdependence
as well as ‘procurement system’, ‘building type’, and ‘project lifecycle stage’ as
variables affecting this relationship. Significantly, the findings showed the
critical role of effective stakeholder interactions in order to compensate for
the unequal distribution of power on design quality decisions. The ongoing
research continues to validate the framework via a large-sample survey of
industry practitioners.

D4H2013

Multi-Sensory Environments (MSE) in dementia care: the role of design

Interdisciplinary research has evolved from a broad consideration in respect
to the rising number of people with dementia, rapid growth of an ageing
population, over-prescribed use of antipsychotic medication and the need for
cost-effective interventions supporting dementia care. Within this context this
research aims to explore the quality of multi-sensory stimulation offered in
homes for residents living with dementia, focusing on Multi-Sensory Environments
(MSEs) in particular, and whether design can improve such experiences
and maximise therapeutic benefits.
Figure 1:
Example of MSE in
dementia care
MSEs are widely used in dementia care as a meaningful leisure activity and a
therapeutic intervention. However, evidence suggests that they often fail to
address the specific needs of people with dementia due to inadequate design
and poor facilitation (Cruz et al., 2011; Dalke et al., 2011). Also, little research
has considered the impact of MSE design on engagement and well-being (Collier
et al., 2010; Anderson et al., 2011).
Figure 2: Examples of existing MSE facilities
This study investigates the aesthetic and functional qualities of MSE currently
provided such as material/colour/imagery applied, spatial set-up, usability,
accessibility, with the aim to establish reasons for success and failure. Fifteencare-homes with MSE will be visited to record how they use MSEs. Data will be
collected using ethnographic methods incorporating structured interviews
with care staff familiar with the MSE and observations of residents and carers.
All residents with dementia who currently use the MSE will be invited to participate.
Data will be analysed using thematic and content analysis. The results
will inform the design development of MSE for people with dementia and how
benefits for residents and their carers can be maximised through improved
design providing a person-centred experience.
The paper presents preliminary findings and methods from this research
project, a collaboration between researchers from design and occupational
therapy, funded by AHRC and supported by Care UK.
http://fada.kingston.ac.uk/de/projects/

D4H2013

Developing lab equipment with healthcare researchers: a participatory design analysis

In this paper, we explore how participatory design (Margolin, 1997) can be applied
to scientific research in the field of healthcare and medicine.
Though user-centred practices are already employed to support patient-side
healthcare activities (Driver et al, 2011), not as much has been done to investigate
how different design methodologies can engage researchers, being
a crucial workforce for medicine (De Covreur et al, 2011). We compare case
studies taken from design history (Maldonado, 1993, Margolin, 1992, Papanek,
2005, Roozenburg et al, 1995) with an experiment of our own, concerning the
design of an Oscillating Perfusion Bioreactor, a bio-medical device now being
used as a research platform for tissue engineering and regeneration. Taking
autologous cells, the OPB performs 18 parallel cell culture threads, in a multiarray
of confined chambers.
Figure 1: OPB: early model, Milan 2011
Our design intervention started from the perfusion patent and an early prototype
of the machine (fig. 1), presenting issues in weight, scalability, kinematics
and affordance. How can designers intervene into research to evolve its
equipment? How can industrial design get involved as a structured discipline
into the development of science? What can designers improve in the performance
of the final product? How can design research support research in
science? Our research methodology concerns a step-by-step analysis of both
the evolving research environment and healthcare researchers, evaluating
their habits, expectancies, behavioural and cultural schemes (Papanek, 2005,
Whiteley, 1993), providing clues for engaging better design practices, both in
terms of final product qualities and time-effectiveness. The findings provide
an answer to these questions, with a detailed theoretical position concerning
the disciplinary code of industrial design (McDonough et al 2002) and practical
indications for taking better policies when dealing with users (Boztepe, 2007)
and applying design management to healthcare research.

D4H2013

Shoe Design Requirements for the Physically Disabled Women

The physically disabled women have difficulties in entirely incorporating the social and
cultural dimensions of shoes into their everyday life due to the lack of products and the bad
quality of the existing ones. The few products available in the Brazilian mass market cause
embarrassment to their wearers as they result from designs which give priority to the
functional aspects without taking the social and cultural dimensions into account.
In order to incorporate such dimensions, this present paper describes part of a study
consisting of the development of the shoe design methodology, which would be able to
allow both effective socio-cultural inclusion and improvement in the quality of life.
In addition to partial conclusions regarding such an investigation, this paper presents the
ergonomic, aesthetical and symbolical aspects concerning the shoe design for the
physically disabled women who live in Sao Paulo, Brazil, with the purpose of responding
how such aspects can provide the wearers with effective social cultural inclusion.
The qualitative methodology, which collected data from both primary and secondary
sources, was applied. Phenomenological approach and semi-structured interviews were
used to raise the main concepts, which would be able to allow both effective social cultural
inclusion and improvement in the quality of life.
By analyzing the interviews, it could be concluded that the shoe design has to meet the
safety and comfort criteria related to the ergonomic aspects, the aesthetics harmony and
balance, as well as the sensuality and femininity concepts as symbolical aspects attributed
to the shoe design by the wearers, so that the shoes can provide them with effective sociocultural
inclusion

DRS 2012 Bangkok

Fighting Fear of Blood Test with Secret Powers: Using game design as a new method of inquiry in design research

Non-verbal forms of interactions as found in play and gaming has not been investigated as
a method that can actually communicate or express an emotional state. In this paper we are
using the design of a computer game (called the Child Patient Game) designed especially
for hospitalized children as Design Case. We are demonstrating how children’s interaction
with a computer game is used as a method for letting children express their emotions
towards a hospital examination.  In order to make sense of the different elements that
constitute a Playful Experience this paper makes use of the Playful Experience Framework.
This framework is an attempt to understand the emotions and experiences elicited by play;
in this case the playful experience elicited by patients and non-patients playing the Child
Patient game.

DRS 2012 Bangkok

Service Design for Social Interaction: Mobile technologies for a healthier lifestyle

This paper presents outcomes of a PhD research that explores the relations between
service design, health and today’s social media specifically mobile technologies.
Mobile and social media tools offer new opportunities for a more user centered, socially
connected, and economically sustainable healthcare system. A major focus of research is to
understand how to bring users to involve in their own health management through mobile
narratives social networks to incite social interaction in promoting healthier lifestyles. This
research aims to identify the problem and explore answers through a practice-based
approach. It is based on research through design model and explores the practices and
processes of design through the participation in a focus project. Locast Health Pproject
aims to provide a helpful set of tools for teen’s risk at obesity to record their sociopsychological
environment and everyday health routines through participatory workshops.
Video diaries, created by a mobile application, visualized & shared in real-time on a
location-based platform. The exchange of information affects health decision-making with
the aim to create a long-term behavioral change towards a healthier lifestyle. Results show
that it is not far to imagine the use of mobile technology and civic media creation as a tool
to understand correlation of behaviors and encourage active participation in your own
health. Locast Health Diary helps developing awareness however, without an expert
participation it may not be sufficient to determinate behavioral change.
The research aims to explore the designer’s role, its relation with other disciplines in
designing service for a healthier lifestyle and investigate the use of participatory and
service design tools for the engagement of users in their long-term healthcare management.

DRS 2012 Bangkok