A Reflection on research through design. An explanation of process.

This is part of my MRES dissertation. This may be incomplete, poorly cited (at this stage). But forms part of a writing discipline attached to design research.

Broadly speaking, I engaged in a largely ethnographic approach to researching transitional care for people with T1D. To build empathy, it is my belief that research must look beyond design discourse for inspiration and create work that responds to the contemporary sociological, psychological, or ecological environment.

As a designer, one of the many challenges of research in healthcare is you are unlikely to have first hand experience of the condition. Such as direct disease experience, or experience of the disease from a family or peer. It is unlikely you’ll have the same age, gender or life experience. Even if this is the case, the experience of the condition can very different to someone else’s. Overcoming this hurdle is vital, as it would be an impossible barrier to overcome if the only people that could design for a condition were the people who had it.

The research aimed to engage with all parts of the healthcare system. Primarily this is the hospital or practice (place) and clinical staff (people). It also can include advocacy groups, charitable organisations or patient groups. For my research, one group stood out, parental care.

As a result, research methods were reflective of a discovery approach. Utilising methods such as grounded theory, and mixing with co-design. This was my primary mechanic for not only keeping the patient at the centre of the research, but also exploring areas around. This includes the interaction between patient and care team, but also patients and their peers and family.

What became immediately apparent is the tacit knowledge that is developed when managing a long term condition over a number of years. For T1D, the daily regimes of testing, dietary control, the use and adaptation and integration of technology, the multiple and varied interactions with parents, peers and clinical care teams. All these facets of management were made apparent through the entire research.

Structure of research.

Briefly, the project looked comprising of a key stages. These included:

Literature review

A comprehensive literature review was done, with a subsequent compilation and analysis of the major themes.

Simulation exercise

In order to better understand the lived experience of managing a condition, I wore a continuous glucose monitor for a week and wrote a diary of the experience.

Clinical observations

A contextual inquiry into clinical practice. These were done over a number of sessions. I passively observed and recorded clinical encounters between an care professional and a person with diabetes.

Co-design

A more in depth analysis of interactions between a PWD and the care team or parents, a game was developed as a technique to mapping the structure and improving the outcomes of clinical encounters.

The goal at the end of this is to suggest broad areas that this research may be applicable. Ideally, the next phase would be to continue the iterative research and design process to create a number of design interventions, working closely with both people with diabetes, their care teams and their parents and peers.

Mapping the process

Murphy et al’s conference proceedings around designing a new PHD (Murphy and Jacob, 2014) , proposes a new research approach that allows for the meaningful interaction between traditional research and practice based research. Figure 1 shows how a project may evolve over time, moving between the two different types with the different flavours of research being assigned to one or the other.

Figure 1 — Designing a new PHD

This was a useful tool in mapping the design research as it can expose a bias towards one research type (either traditional or practice based). Furthermore, laying additional data on top can help see any biases in research type, or methods. For example, the researcher may have focused too much on semi-structured interviews to the detriment of other methods. Critical assessment of the journey can be done through suggesting improvements or amendments for shortcomings in previous research efforts.

Figure 2

I mapped my research on top of this to show over time (see figure xxx), the number of activities and methods that were engaged over the course of the project. It is also useful, in that it suggests future courses of action, should myself or anyone else interested in the findings can take forward.

What I found? There seemed a equal mix of both practice and traditional research. In some cases, especially with the co-design tasks, how the research methods was executed (designing a games as a research tool) spanned both traditional and practice based approaches.

This was a process of discovery. There was no specific ambition to achieve any specific output at the start of the process. Each stage influenced the subsequent stages, through the findings it generated and how those findings set the direction and ambition for the next stage. This approach was highly responsive to the things participants said and did and I believe is very useful, especially in a healthcare setting. For a novel researcher, there is an expectation that you can ‘fix’ healthcare. For such a wicked problem (Rittel), most solutions should seek to address issues over time (Peter Jones) and measure the response. A responsive approach like this is highly suited to this end.

Engaging with users

This maps shows a growing focus on designing with users rather than designing for users. After the initial literature review, all subsequent methods (including bodystorming) were aimed at increasing the understanding the condition and its management.

Engaging with organisations

It was high beneficial to engage with organisations to support the design research. Namely, this was Health care professionals at the Diabetes unit at St Mary’s Hospital Imperial College NHS Trust and JDRF, the Juvenile Diabetes Research Fund. These are shown as ‘design drivers’ and I would argue, these relationships underpin the success of any research project.

Engagement with users is better facilitated when working through structures that have already engaged with users. For healthcare, these are the existing clinical structures such as HCP’s and the clinics inside hospitals. But many charities that work in this space, and can provide support and information with regards to aspects of research like participant recruitment.

Engaging with the community

Setting up a research blog was incredible useful in engaging with the wider T1D community. This channel was a route to publishing my research, almost as it happened. Some blogs were written within an hour of research being completed. Others took days/weeks. What it introduced was a discipline of recording, understanding and writing. As a result, this research record helped form the basis of this dissertation.

The T1D community became engaged in the research and it was through social media that news about the project was spread. This helped (to some degree) with recruitment of participants but also helped promote the work. Ironically, this helped in making connections, ironically, to other parts of the diabetes transition service. This may well have been a connection that was made anyway. However, by writing and publishing, a degree of momentum built behind the work and people were more willing to become involved.

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Tim Allan

Fmr: Design Manager for clinical care @ Babylon. Fmr Lead Design/research in Urgent & Emergency Care at NHS.uk. RCA MRES in Healthcare & Design.