Pressure: How to meaningfully engage with patient stories

“Facts bring us to knowledge, but stories lead to wisdom.”- Dr. Rachel Naomi Remen,Kitchen Table Wisdom, p. x1 With medicine's return to the humanities in the 1980s and 90s [[1]Wailoo K. Patients are humans too: the emergence of medical humanities.Daedalus. 2022; 151: 194-205https://doi.org/10.1162/daed_a_01938Google Scholar] and the emergence of patient engagement as a cornerstone of quality healthcare [[2]Carman K.L. Dardess P. Maurer M. Sofaer S. Adams K. Bechtel C. Sweeney J. Patient and family engagement: a framework for understanding the elements and developing interventions and policies.Health Affairs. 2013; 32: 223-231Google Scholar], patient stories have increasingly been incorporated into all facets of medical training and practice. Patients and their family caregivers are being asked to “share their story” with healthcare providers in medical journals, classrooms, conferences, and even in operational planning under the auspices of quality improvement [[3]Wilcock P.M. Brown G.C. Bateson J. Carver J. Machin S. Using patient stories to inspire quality improvement within the NHS modernization agency collaborative programmes.J Clin Nurs. 2003; 12 (PMID: 12709117): 422-430https://doi.org/10.1046/j.1365-2702.2003.00780.xGoogle Scholar]. Despite the inherent, and increasingly recognized, value of incorporating patient stories into these contexts, less attention has been given to providing healthcare providers the concepts and tools to help them engage with the stories of patients and their family caregivers in a way that maximizes potential benefits. 1From this point forward we will use “patient story” for brevity, however, the reader could include “or family member/caregiver” into each of our uses of that phrase. This commentary is meant to help fill this gap by using a patient-created digital story as a paradigmatic case for how healthcare providers can engage with stories in a meaningful way. Digital stories are two-to-five-minute visual narratives “that synthesize images, video, audio recordings of voice and music, and text to create compelling accounts of experience” [[4]Gubrium A. Digital storytelling: an emergent method for health promotion research and practice.Health Promotion Practice. 2009; 10: 186-191https://doi.org/10.1177/1524839909332600Google Scholar] (p. 186). The Digital Storytelling (DST) process used to create these stories originated in community advocacy and social justice contexts in the 1990s [[5]Lambert J. Digital storytelling: Capturing lives, creating community.4th ed. Routledge, 2013Google Scholar] but in the past two decades has been increasingly used in healthcare contexts to create and share patient stories [[6]Lang M. Laing C. Moules N. Estefan A. Words, camera, music, action: a methodology of digital storytelling in a health care setting.Int J Qualitative Methods. 2019; 181609406919863241https://doi.org/10.1177/1609406919863241Google Scholar]. At its most basic level, the DST process comprises the creation of short digital media products with “the assistance of skilled facilitators, in a safe, technology-enabled environment” [[7]Flicker S. Hill A. Digital storytelling.in: Coghlan & M D. The SAGE encyclopedia of action research. Sage, 2014: 267-270https://doi.org/10.4135/9781446294406Google Scholar] (p. 3). The digital story discussed in this commentary, titled Pressure (Watch Here), was co-created by the two authors specifically for the JMIRS readership (see Author Bio's for more information about specific roles). As you will see, Pressure, compresses 40 years of Vikram's experiences into just four minutes, and in doing so reveals the connections between things that often exist below the surface of routine clinical interactions. Indeed, the short duration of the story, combined with the interpretive potential of word, image and composition, both distills and expands Vikram's experience with Rhabdomyosarcoma, and consequently, offers clinicians a deeper understanding of what matters to him as a long-term cancer survivor who received radiation therapy. As recognizing what matters to patients and their families is the cornerstone of person-centred care [[8]Barry M.J. Edgman-Levitan S. Shared decision making: the pinnacle of patient-centered care.New England J Med. 2012; 366: 780-781https://doi.org/10.1056/NEJMp1109283Google Scholar], one of the primary benefits of engaging with patient-created stories like Vikram's is an increased ability to understand (not validate or assess) the many factors at play in a healthcare experience so that it can be personalized in a meaningful way. It is in this pursuit of understanding that we offer three guiding questions to support the JMIRS readership (and all healthcare providers) to engage in a more significant way with both Vikram's story and the patient stories they interact with in the future. The word “resonance” means “prolongation or repetition of sound by reflection, reverberation” and comes directly from the Latin resonantia which means “an echo” [[9]https://www.etymonline.com/word/resonance.Google Scholar]. This word has a direct relationship to many of those working in the field of medical imaging and radiation therapy. For example, with an MRI it could be said that each type of tissue has a different resonance (echo) in that the water molecules contained in each of them return to normal oscillations at different speeds allowing for distinctions to be made. Stories can have the same effect on the human consciousness as the powerful magnets and radio waves of the MRI machine; certain elements of a story will stay with us longer than other elements, and becoming sensitive to these extended reverberations of the soul is the first step to engaging in a meaningful way with a patient story. Therefore, it is a good practice when engaging with patient stories to both pre-brief and debrief the experience with this question, whether alone or in a group context (i.e., “As you watch/listen/read this story, find one thing that resonates with you… and we will reflect/share afterwards”). In a digital story like Pressure, what resonates can be an image, word, phrase, idea, or compositional element. Perhaps it was an image of Vikram as a child or adult, or the different ways in which “pressure” was represented in the story, or how a transition between images was timed to match the delivery of a specific phrase. As we are all a product of our own language, culture, and history, both individually and collectively, it is possible that every person who views Vikram's story will find different elements that resonate with them. Learning to recognize what resonates in a story is important because in all good stories that are well told, and certainly in Vikram's digital story, every word, image, or compositional decision is purposeful and therefore holds a potential meaning. This leads us to the next question. Many healthcare interactions are constrained to literal discourse where reducing all communication to a single clear meaning is desirable. As literal communication is the default mode of engagement, the challenge for professionals in this field, and all medical and allied health disciplines, is to switch to a figurative paradigm when engaging with patient-created digital stories. In other words, to meaningfully engage with a story requires the audience to look below what is “said” to the “unsaid” or even “unsayable” dimensions of a patient's experience. Flipping that cognitive switch is the primary motivator of the second question: what does this mean to me? Once a resonating element of a story is identified, the natural follow up question is, why? Why did that resonate with me? What was it about that image/word/phrase/idea that made it stand out to me? The goal of this question is reflexive engagement with the story as both a healthcare professional and human being (i.e., examining your own feelings and reactions to the story) so that you can begin to understand Vikram's experiences through the lens of your own. In Vikram's story there is apparent figurative imagery and language that require audience reflection and interpretation. Depending on the answer to Question 1, some possible iterations of Question 2 that draw us into the “unsaid” or “unsayable” dimensions of the story could be:(1)What does the title of the story “Pressure” mean to me?(2)What could he have meant by timing the images of coal and diamonds with specific moments in the voiceover or by overlaying them with other photos?(3)How did the meaning of the coal and diamonds change as the story progressed? It is important to note that there are no correct answers to these “what does it mean” questions; the title of Vikram's story alone has multiple interpretations that could all be equally valid. Yes, Vikram had a central idea that he was trying to communicate to his audience, but he purposely told the story in a way that held the door open for each viewer to draw their own meaning from his telling. Accordingly, the primary purpose of this question is to encourage us to interpret what has resonated with us and in doing so take us deeper into the storytellers experience. A good story/storyteller will purposely enhance the latent interpretive potential of their story by leveraging the plurivocity (i.e., many possible meanings) of all spoken and visual language, but even storytellers who don't understand this principle use words and images that must be interpreted in order to be understood. Ultimately, this one question can stop healthcare providers from simply “consuming” a patient story and instead enable them to participate in its ongoing revelatory power; a process that is concretized by answering the final question. As we engage deeply with Pressure using the two previous questions, the more generalizable lessons from Vikram's 40-year survivorship experience can begin to crystalize. It is commonly expected that healthcare providers will instinctively collect these pearls of wisdom and incorporate them into the intuitive and embodied knowledge that they require to provide high quality, person-centred care. However, asking this third question can help with this process of identifying and internalizing important learning available in a patient story. Often, the wisdom embedded in a story emerges when we think beyond the external challenges of medical treatments and the individual experience represented in the story (i.e., said, unsaid, unsayable) to the larger experiential or philosophical themes and ideas that could be relevant in any clinical context. For example, you may not be a radiation therapist, but do you ever interact with young adults in your work? Could they be experiencing similar thoughts, feelings, and emotions to those Vikram expressed in his story about the medicalization of his young adult years? How could this story help you understand and interact with young adults differently? In Vikram's story, there are many words, images, and compositional elements that point to the larger themes he is exploring:(1)The feelings of loss and disenfranchised grief that occur when the expectations we have for our lives do not line up with reality.(2)The pressure that young adults can feel to “get on with life” and “be successful” despite the late and long-term impacts of radiation treatments.(3)The relief of having a healthcare provider normalize the challenges associated with late and long-term effects and offer meaningful support.(4)The desire to do something with the hard-won knowledge of living with late and long-term effects. All of these philosophical themes that are embodied in Vikram's story could be present in the lives of patients and their families no matter their specific illness or injury. This means that any person working in the healthcare system could glean important wisdom and understanding from Vikram's story, regardless of their current role or scope of practice. In a healthcare environment dominated by facts and knowledge, the value of a good story that is well told is much greater than many of us realize. Hopefully, through this commentary the purpose a patient created digital story like Pressure has become clear: stories do not tell us what to think, but help give us things to think about. The primary goal of engaging with a patient story like Pressure is not to arrive at a definitive and rigid explication of a single person's experience, or to tell healthcare providers how to do their job, but to cultivate a deeper understanding of the human health experience that can lead to practical wisdom. Consequently, patient stories truly do not reach their full potential without interpretation by the audience through thoughtful reflection. In other words, the active participation of healthcare providers is required to maximize their value to the healthcare ecosystem and fulfill the ultimate purpose of the telling. Every patient story contains latent wisdom that is freely available to all those who take the time to interpret and reflect, and the three questions offered in this commentary can be a good place to begin these vital conversations.

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