Moving Towards Design Justice through Multivocal Design in Health Education
Author: Dani Dilkes, Western University
Collaborator: Dr. Courtney Casserly, Schulich School of Medicine and Dentistry, Western University
In 2018, I slipped into the back of a lecture hall where a clinician was giving a lecture on Multiple Myeloma. I listened to a factual and detailed presentation of what Multiple Myeloma is (a blood cancer), how it presents, how it is treated, and the prognosis of patients. The presentation was full of statistics and diagrams of mutated cells. The lecturer was familiar to me, as she was one of my mother’s team of doctors, a very knowledgeable and not unkind physician.
But what she missed on that day was the visceral experience of finding out that a loved one has a disease that you had never heard of before and didn’t fully understand. The constant cycling between hope and hopeless of a barrage of experimental treatments. The exhaustion of living between home and the hospital. The anger felt towards a medical system that determined appropriate treatment based on a cost-prognosis analysis rather than the life of the patient. My experience as a family member was not captured in the expertise of the lecturer. My mom’s experience as a patient was certainly not captured. The knowledge shared felt distant, alien, and not remotely reflective of our lives as my mom navigated a horrible disease, and we tried to support her. Sitting in that lecture hall diminished and invalidated our lived knowledge of Multiple Myeloma, as though what we knew it to be was unreal, and biassed by our inexpert emotion, subjectivity, and humanness.
This experience raises an important question about knowledge and experience in medicine (and beyond): What is expertise? Who has it? And what makes them an expert?
In my years working as a curriculum developer in an undergraduate medical program, I often encountered other examples of imbalances in perceived expertise. In my first week working in the program, I attended a workshop on medical case writing in which a non-clinical faculty member prefaced her opinion on teaching with the statement “Well, I’m only a PhD but….”. This statement struck me at the time and has stuck with me years later. It was as though she felt that her knowledge of teaching was less than that of her MD colleagues, a sentiment that seemed to be otherwise woven throughout the program structure.
In a later year, I facilitated an interdisciplinary case discussion where students from Medicine, Nursing, Pharmacology, Social Work, and other health care programs came together to discuss a case and their roles. Each student explained the scope of practice for their future profession. The medical student, the last to speak, said something to the effect of “Well, I basically do everything that’s been mentioned, but it’s great to know that I will have support.” Which, for me, was another striking example of how expertise in medicine is perceived and constructed.
The Singular “Expert” in Medical Education
In medical education and practice, physicians are the knowledge holders, and knowledge from other sources is often undervalued or ignored (Janns et al., 2012). This single perspective expertise can be seen as a form of epistemic injustice: the devaluing of certain types and sources of knowledge based on a hierarchical bias (Fricker, 2007). Key perspectives that are often absent from medical education are the knowledge and expertise of both other healthcare practitioners and the patients themselves. Different healthcare professionals hold different amounts of power in healthcare settings which is particularly problematic in interprofessional care settings, where different healthcare practitioners need to work together but don’t necessarily understand and value each other’s expertise. This hierarchy can impede knowledge sharing across professional boundaries (Oborn and Dawson, 2010) and impede the translation of tacit knowledge to explicit knowledge (Quinlan, 2009).
The undervaluing of patients as sources of health knowledge can result in medical gaslighting, where patients’ own experiences of illness are discounted as a valid source of information, resulting in poorer health outcomes and a reluctance of patients to engage in health care-seeking behaviour. A common example is the underdiagnosis of endometriosis, a chronic health condition that impacts women and presents as pelvic pain and irregular menstrual cycles. Women report that their concerns are often dismissed or ignored by physicians, resulting in a prolonged time between the onset of symptoms to diagnosis (Koufopoulou, 2022).
Curricular design processes that favour a single perspective aggravate this bias and result in a narrow understanding of healthcare practice and experience which, when embedded in teaching materials, reinforces this problematic knowledge hierarchy. In traditional instructional design projects, a single subject matter expert (SME) provides content knowledge to an instructional designer (ID) who converts that knowledge into learning objects. This expertise may be based on training, professional experience, credentials, or other revered forms of knowledge merit. The resulting module often has one perspective, one voice, and, in my experience, especially in STEM instructional development projects, quite often fails to acknowledge the inherent bias of a single perspective.
Redefining Expertise in Health Education
We, a neurologist and an instructional designer, endeavoured to solve this problem by creating a teaching module focused on developing interprofessional competencies. Based on the professional experiences of the neurologist, we focussed on an interprofessional stroke case, which would allow us to showcase the myriad of healthcare professionals involved in stroke care. However, we wanted to ensure that this module didn’t just teach about interprofessional teams but rather authentically reflected the distributed expertise of an interprofessional team. To do so, we moved away from the traditional SME-ID relationship, which centres on the expertise of a physician. Instead, we took a Design Justice approach, which “values insights that are developed through open dialogue, empathy, and the lived experience of people from the communities that will be the most affected by the designed object or system” (Costanza-Chock, 2020, p. 230). In the design of this case, we attempted to redefine “expertise” by centring the voices of everyone involved in stroke care. Our approach evolved throughout the design process as our understanding of expertise and collaborative design changed.
Patients as Experts
A key member of the interprofessional team and an important source of expertise that is often overlooked is the patient and their family members (Orchard, 2015). Patients can be seen as Lived Experience Experts (LEEs), important sources of knowledge to inform and improve healthcare practice and education (Vázquez et al., 2023). They are experts in their own experiences of illness and of the healthcare system— an expertise that, from a systems perspective, is as important as traditional professional expertise in understanding healthcare.
We started by asking stroke patients to share their experience of stroke care. We interviewed five different patients and used their stories to form the basis of the teaching module. Through their stories, we were able to identify the different healthcare professionals who needed to be involved in the project and the journey of stroke from a patient perspective. The stories shared by the LEEs were used as the basis of a fictitious stroke case. We experienced friction between our approach and traditional methods of data collection from patients, which emphasise aggregation and anonymity rather than highlighting individual experiences. We had to work closely with the privacy offices at our partner institutions to develop a consent process that fit into their policies while allowing us the freedom to work with patients as individuals with unique experiences. You can hear the story of one of our Lived Experience Experts, Nicole, below.
There is a clear difference in the type and nature of the knowledge that patients and families with lived experience of disease and health care hold when compared to the objective knowledge of clinical experts. Patient expertise is affective, personal, and subjective, which is simultaneously why it’s a powerful and important form of knowledge, but also why it requires a different type of relationship building in a design project. Asking patients to recount their experience of health care can be re-traumatizing and invites a level of vulnerability not expected of other types of experts. For example, in my first draft of this post, I didn’t include my personal experience of the health system because it felt (feels) too real and too personal, but it also conveys a very real example of the discrepancy between clinical expertise and lived expertise. At the start of this project, I think we were underprepared for supporting this element of lived experience knowledge sharing, but it is something that we worked to develop our understanding of and approach to throughout this and subsequent projects, drawing heavily on Trauma-Informed Engagement principles.
A Shifting Understanding of Interdisciplinary Expertise
In our initial design plan, we felt it was essential to invite real healthcare practitioners to participate in the case to ensure that their roles and expertise were accurately portrayed. However, our design process was still quite biassed by traditional forms of expertise. Early in the project, one of the project leads scripted the interaction between EMTs and the patient based on her understanding of what an EMT does and what they are responsible for. As a member of the stroke team, she was confident in her understanding of the roles of different team members. However, our EMT consultant noted with bemusement that the scripted scenario did not accurately reflect their role, expertise, or the typical course of events when responding to a suspected stroke. We quickly realised that it wasn’t enough to have real health care professionals star in the case, but that if we really wanted to tell the authentic story of stroke care, we needed every member of the team to script their own roles and tell their own stories. This resulted in what we are calling “multivocal design,” which meant redistributing power and allowing each individual to bring their own expertise to the design process. Each team member also provided a detailed overview of their understanding of interprofessional practice and the scope of practice for their role. Interestingly, many emphasised the diversity of expertise as a fundamental benefit of interprofessional practice. You can watch a snippet of the interviews here:
As we talked to and learned from each participant, we uncovered new nuances of stroke care and identified new healthcare professionals that were integral to the process but overlooked by our traditional experts and even the patients themselves. Each new perspective reshaped the story, which evolved into a complex, multiscene case; the entire process really emphasised the importance of multivocal storytelling.
Rather than emulating the traditional singular Subject Matter Expert approach to instructional design, our approach to design allowed us to incorporate the expertise of over 22 healthcare professionals and five patients into a teaching module. Patients’ own experiences of stroke care were elevated as a valid source of experiential knowledge. The resulting module, now embedded in the required curriculum for undergraduate medical trainees, allows for new forms of expertise to be acknowledged in medical education and by the next generation of physicians. It has also created a framework for patient-centred design that we continue to evolve and apply to other design projects, allowing us to centre the importance of patient knowledge in understanding and ultimately improving healthcare practice.
Poster Presentation
Multivocal Design (Ethical Design Case) by Danielle Dilkes
References
Costanza-Chock, S. (2020). Design justice : community-led practices to build the worlds we need. The MIT Press.
Fricker, M. (2007). Epistemic injustice : power and the ethics of knowing. Oxford University Press.
Janss, R., Rispens, S., Segers, M., & Jehn, K. (2012). What is happening under the surface? Power, conflict and the performance of medical teams. Medical Education, 46(9), 838–849.
Koufopoulou, M., Teng, Y., & Gomez Espinosa, E. (2022). SA66 Patients’ Perspective on Barriers Related to Delayed Diagnosis of Endometriosis: A Systematic Review of Qualitative Studies. Value in Health, 25(12), S496–S496.
Oborn, E., & Dawson, S. (2010). Knowledge and practice in multidisciplinary teams: Struggle, accommodation and privilege. Human Relations, 63(12), 1835–1857.
Orchard, C. (2015). “Towards a framework of client-centered collaborative practice”. In C Orchard & L. Bainbridge (Eds.) interprofessional client centered collaborative practice: What does it look like? How can it be done? Nova Publishers.
Quinlan, E. (2009). The “actualities” of knowledge work: an institutional ethnography of multi‐disciplinary primary health care teams. Sociology of Health & Illness, 31(5), 625–641.
Quinlan, E. (2009). The ‘actualities’ of knowledge work: an institutional ethnography of multi‐disciplinary primary health care teams. Sociology of Health & Illness, 31(5), 625-641.
