Christina Yianni
Can design interventions positively enhance the patient journey experience of Deep Brain Stimulation therapy?
Summary
My research has been a journey of exploration and discovery into Deep Brain Stimulation therapy using a variety of tools and methods. My research has led me to focus on two critical areas of consideration: how can design help patients with what to expect of the DBS journey and how can design help with managing expectations of the surgery in the long term?
One complexity is that DBS is a restorative and hope-giving procedure for many living with an underlying degenerative condition and its outcomes are therefore variable and changeable over time. Every patient has to consider their individual journey in this context.
Additional info
Coming from a non-design and non-medical background, but rather a filmmaking and legal one, I found engaging with design thinking processes and research techniques invaluable in approaching these questions in innovative ways, as well as combining them with skillsets I already had. I have described some of my methods and tools below.
METHODS & TOOLS
Collaboration | Co-design | Action Research
Collaborating with others with diverse skill-sets has been a central part of my journey as a researcher.
STEREOTACTIC FRAME
In order to try and empathise and understand one pain point of the journey, the “framing” process, I worked with theatre production designer Holly Pigott (@hollypigott) to re-visualise the frame as if a theatre prop within a production. Having a tactile tool that we could hold and see and feel in 3D and wear ourselves offered up insights and prompted reflective discussion, not just about the re-design of the object itself but its relationship to the patient and procedure.
SOUND DESIGN
A second collaboration for an action research piece was with sound designer Dinah Mullen (www.dinahmullen.com) to research the effect of music and sound on anxiety and stress.
Four pieces of sound design were created in response to patient and clinician insights. They each follow a different narrative path: one is designed for relaxation, one to help focus inwardly in a more meditative manner, one to distract and one to comfort through familiar every day sounds.
Which sound designs do you connect with?
Could you imagine having a ‘soundtrack’ to your operation day as a self-help tool?
Dinah Mullen: "It was rewarding to apply my sound design skills in a different way. I ordinarily design for performance - helping to guide the audience's emotions and responses towards a narrative. Here I am using similar tools but for a completely different reason."
CROSS POLLINATION RESEARCH
Cross-pollination is a method of drawing insights and inspiration from diverse sources. I held a workshop with film directors to see what tools and devices they drew on when they have to help actors prepare to reflect traumatic incidents and depict scenarios that are not their lived experience.
REVISUALISING THE PATIENT PATHWAY
One of the key areas of my research process has been co-designing prototypes with both clinicians and past patients of DBS. This is an ongoing collaboration that has taken place during the pandemic through virtual interviews and workshops and by creating spec probes to facilitate conversations and gather opinions. Understanding the journey and procedure from the perspective of both patients and clinicians has been key in designing a tool that reflects accurately what one can expect as well as making use of helpful suggestions to allow potential patients to evaluate, prepare and feel empowered to draw friends, family and carers into the conversation.
RESEARCH QUESTIONS
One of the critical questions that my research throws up is how does design help in managing expectations. While designing the prototype for the patient journey map I faced the dilemma as a designer of how to clarify and express the hopeful restorative qualities of DBS without taking away the seriousness of the operation and the decision-making surrounding it. It is a dilemma mirrored by clinicians and advocate patients who want to encourage this life enhancing procedure but also want to give transparency to the risks and to the reality of the long-term trajectory. What design tools and ethical measures can we use to test the veracity of our design interventions and their impact on patients?
YOUR FEEDBACK
What does the idea of going for brain surgery conjure up in your mind?
What key things would you want to know?
Please email any answers, reflections or questions.
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Illustration by Becki Hiscocks @mostholydeath
