28

CURRENT ¢ HEALTH + WELL BEING

METHODOLOGY

While our methodology is by necessity project specific, we draw
upon a common set of “tools” and we follow a similar research
trajectory for most of our work.

First, a full review of current literature is undertaken to
educate the project researchers, to understand the problem, to
identify what is known and how it was studied, and to ensure
that any existing work is not duplicated. This also encompasses a
contextual survey, to see how other research teams or designers
have approached the problem space. This literature review is
often followed by an exploratory research phase, where we talk
to partners and stakeholders informally to gain a better under-
standing of the problem space. From here, we typically generate
a series of research questions and a thesis statement.

To address these questions, we consider how generative
research techniques could be applied to gain a deeper under-
standing of the challenges and attitudes of the stakeholders, as
well as developing empathy for users. These methods, largely
based on the work of Sanders and Stappers in their seminal work
Convivial Toolbox (2012), include co-creation activities, focus
groups, ethnographic probes, job shadowing, direct observation,
user testing, interviews, and surveys.

From the results generated by this “soft” research process, we
use an affinity mapping technique to look for areas of common-
ality from different participants. We group information into
common themes. From these themes we create a set of guiding
design principles to help inform the iterative stage of our process.
This iterative phase can also be inclusive, bringing partners into
the brainstorming process. Last we move from iterations through
refinement to a prototype design. Where feasible, we re-engage
with stakeholders to evaluate the success of the proposed design
in user testing.

CURRENT ETHICS PROCESS

Established formally as a research centre in 2012, the Health
Design Lab (HDL) has engaged with Emily Carr’s Research
Ethics Board on many project and course-based applications.
From this experience, researchers in the Lab have developed a
strong understanding of the ethics landscape, particularly as it
applies to design and research for healthcare. This knowledge
has proven highly useful, particularly in collaborations with

the health authorities, as they have an understandably rigorous
process of their own, also based on TcPsz (Tri-Council Policy
Statement: Ethical Conduct for Research Involving Humans).
Students who are engaged with any HDL project are required to
complete the TcPs2 tutorial. But further, all Research Assistants
participate in discussions about ethics and learn how to apply
their knowledge to their engagements with participants. In all
cases, students are closely monitored and supervised by faculty.

PROPOSED ETHICS PROCESS

The HDL is proposing a revised process where the HDL and the
REB would agree on a set of protocols that would inform whether
a full project-based application is required or HDL would proceed
with its own vested authority for simple projects. If all protocols
are met, then HDL would be empowered to commence research
without a formal ethics submission, and submit all documen-
tation at the end of each project. The following protocols are
suggested:

|. Projects that engage adults capable of informed consent partic-
ipating in activities that are minimal risk (defined as not more
than participants would encounter in everyday life) would fall
within HDL’s scope of approval. These would include:

A.Co-creation B Interviews C.Surveys D User testing
E.Ethnographic probes Observation G Job shadowing
2. All principles of informed consent to be followed on all projects.

5. HDL faculty will ensure that all project researchers have
completed the TcPsz2 tutorial, and will take on educating
students around ethical practices in research.

4. The HDL Lead Researchers will assess HDL projects for REB
protocols and will work with partners, students and faculty in
determining the nature of risk and benefits for any given project.

5. Lead HDL Researchers will oversee all projects, ensuring all
ethics protocols met.

6. Allethics-related materials (consent forms, model release
agreements, etc.) will be delivered to the REB office for safe-
keeping at the end of the academic year, or completion of the
project.

7. Any data will be given to the REB office for secure storage (note,
HDL “data” is usually ephemeral and not able to be stored.
Such items as sticky notes on kraft paper are reassembled from
their original context and destroyed after design principles
have been extrapolated).

8. Anymous involving project partners will be forwarded to the
ECU REB as they become available.

9. Student and faculty members Core Ethics Tutorial certifica-
tion will be forwarded to the ECU REB for reference.

Projects that would trigger a full project-based review would
include:

|. Those for which informed consent is sought from vulnerable
populations such as children (minors) and the elderly (who
may have physical or mental impairments).

2. Any activity deemed to be more than minimal risk such as a
research inquiry that looks into diabetic self-care management
wherein the research participant is asked to divulge informa-
tion pertaining to diet, medications and exercise. This might
necessitate seeking professional mediation by a healthcare
practitioner to mitigate the risk.

SUMMARY AND SCOPE OF PROPOSED RESEARCH
1. Rationale

The overarching goal of the work of the Health Design Lab is to
apply ahuman-centred design methodology to challenging prob-
lems in healthcare, offering outcomes that have the potential to
effect real change within a specific environment. The primary

goal of this work is therefore directed towards designed outcomes.
These outcomes vary greatly and range across systems design,
product design, interaction design, etc. The research that is
conducted for this work is undertaken to directly inform the design