Affective Data was initiated by a personal observation on medical records being highly codyfied documents, and therefore complicated to read, if not sometimes impossible. Established from a bureaucratic perspective, these reports are not addressing the patients but rather the medical body. I found a paradox in the restricted nature of these files yet built by archiving personal data. Also, only information strictly necessary to establish diagnosis are kept, whilst all of the personal contextualisation and insights are cut out. Medical data are human-related, but processed as machine-fixing information. These considerations directed the research project towards the accessibility standards within the medical communication process, both from the documentation procedure and the exchanges between patients and clinicians.
Medical records are traces of events experienced by a patient. Their traditional purpose is to document a patient’s condition in order to establish a diagnosis. For that purpose, medical practitioners collect a pool of information from their observations and patients’ explanations, operating a selection of what is useful to be kept and what is dispensable. They then draw a conclusion, report it on a file and end the visit. A medical record is generated. The collection and communication of those personal data seems to mirror a mechanism of extraction rather than a collaboration, and the inaccessibility of these data is a critical gap in today’s health system. From a designer perspective, this research questions how a visual re-configuration of the communication system could facilitate the understanding of these datasets. How could visual communication facilitate their accessibility?
As a means to confirm my observations and reflection were not isolated but actually occurring and impacting people, I sent out a survey to a sample audience of 50 people, from an age range spread between 18 and 60, coming from different ethnic, cultural and social backgrounds, trying to identify challenges in medical communication. I inquired about discourse or treatment misunderstanding, oversight or illegible records. The outcome of the survey revealed a majority of experiences relating incapacity either to access personal medical data or to fully understand an exchange with a clinician (see the graphics above). It highlighted specific areas where a visual communication practice could have a positive impact on patients’ experience, by reconfiguring records of data or designing tools to facilitate the conversation between clinicians and patients. One aspect that seems to be central from the different issues observed is the matter of language used. There is a language gap that could be bridged by visual translation.
After gathering an overview of the situation from patients’ perspectives, I had a conversation with a medical specialist to appreciate the situation from another angle. I interviewed Dr. Arnaud Cocaul, a nutritionist, whose methods consist in assigning a guideline to patients that they would have to apply for a month, until the following session. And as a form of proof for the clinician, patients have to take notes and draw a statement from their everyday efforts—ranging to walking half an hour a day, eating more slowly and going to bed earlier. Collecting those data can be long and sometimes binding. Dr. Cocaul acknowledged the issue and yet tries to minimise the details to gather, but regreted the lack of tools that could transform homework into a more pedagogical and self-reflective moment. I found the context to be a place for a design practice to facilitate collection and communication. I designed a monthly toolkit to support patients in their note taking for two chosen tasks: the half an hour walk a day and the report of a day schedule, noting when they wake up, go to bed and have their meals. The kit was given to 20 patients for a month to support their collection of data.
This month-long experiment highlighted how the acknowledgement of one’s condition is fundamental, and not always obvious to observe. Especially in the context of nutrition, changes are progressive. “The body doesn’t like brutal changes”, explained the clinician. So what may look like a stagnation would actually be progress, and being able to witness it is highly encouraging patients to keep making efforts. The contextualisation of a patient is linked to the routines they are building and is key to be shared to clinicians to establish a complete understanding of patients.
The main line of inquiry in the research was to determine a visual language, which would be sensible, relatable and decryptable. The practice of data visualisation involves a process of translation from the dataset to a visual system. The designer becomes therefore a translator, by appropriating the data and using interpretative representation. Data visualisation engages a will of simplification, not by reduction but by clarification. A new language built through an interpretive lens. The process aims to make data more engaging to the targeted audience, the patients from data are originated.
After investigating the topic from a clinician point of view, I directed the research towards the patients’ experience. I have met with four people who had a specific medical condition, which they judged as an impactful event or series of events in their lives, as they all defined the experiences to me as “out of time”. The conversations I had with each of them unpacked their experience, running through their medical story, aligned with their life events and different physical and mental states they went through.
When listening to the narratives I was live mapping the information I was receiving. The complexity of the maps produced live illustrates the multifaceted nature of a patient’s story and their perspectives on medical events. They highlight the multiplicity of information that would be delivered to a clinician orally and in a short amount of time, enhancing possible oversights by the patients, or condensed and sometimes reductive reports produced by doctors.
Using an intuitive process of data visualisation I explored how I could visually translate these four stories. How I could shift from oral to visual storytelling, to make these amounts of information more digestible to communicate. By asking patients about personal insights on the process, the goal was to highlight possible cause and consequences connexions between life environment and health history. The reconfigured visualisations aim to emphasize such correlations. The resulting infographics are visual descriptors of the stories. Their role is to build an impactul outline of a contextualised medical experience, from the patient’s perspective. Just as a folder filled with medical records, these visuals are detailed traces of medical history. They are interpretive medical records.
The presented interpretive maps are propositions for alternative and contextualised visualisations of medical data, aiming to make the database more relatable, understandable and empathetic to each patient. This approach prevails in clarity over consistency. Even if the visuals are not as straightforward as bureaucratic documents would be, they have the quality to embrace the multiplicity of layers constituting someone’s experience.
By their nature, data have both record and predictor values. An empirical approach to contextualised medical knowledge would give the possibility to patients to acknowledge past behaviours, contexts, actions and consequences, and reflect on these data to better cope with eventual future encounters.
Adding context to the inert data brings back their humane value, previously removed by the dryness of the numbers and sophisticated medical jargon. data are generated by people’s experiences and should be collected and reported accordingly to their nature. The mechanism of poeticizing the medical dataset through interpretive visualisations causes more intriguing and friendly communication means. Building visuals with a humane dimension makes the information less distant for the viewer’s perception, and therefore more tangible and comprehensible. The bureaucratic display can be deviated to a system that would feel unique and sensible to everyone.
As a case study to this approach I chose to work in the first place with autobiographical material. The introspective process was a practical solution to access a medical archive in terms of technical accessibility of the material ans well as sharing and use rights of the data. I also intended to immerse myself in the process to not only speculate on the impact of the work but also be able to acknowledge it from personal experience.
From this specific approach, I researched which method would reach an audience with such a personal process and examining the designer’s role to create an adaptable system that other patients could use and make theirs. Through what format could the process of appropriation of medical information happen at a connecting stage between the personal and the medical? My speculative response was to create a tool that would bring patients and clinicians’ knowledge in one place. What should be the common visual language in use? How could processes of data visualisation bridge the two forms of communication?
In order to complete the research it felt essential to engage people in the making of visual translations. Because the mechanism is quite subjective and personal, I wanted to be able to acknowledge different perspectives on this approach and see how people situate themselves in it. It is this grey area that I wanted to explore and navigate in during a workshop. I approached the making in session as a scoping study around intuitive visualisations of data. I set a series of four provocation exercises for participants to react to: How do you represent a timeline? How do you visualise a scale of intensity? How do you compose with variable values? How do you symbolize a cause and effect relationship? These questions were established by mirroring categories of data representation I’ve been confronted with when working on my own visual system.
It was fascinating to observe such a diverse collection of responses. It greatly informed the research towards the notion of empathy that I’ve been interrogating with the produced designs. Creating a community of intuitions and interpretations so diverse raised the importance of space left for appropriation of the created system by users. The intention of this research is to reflect on ways to facilitate communication by building frameworks and support tools, without being imposing but rather playful and collaborative.
A design process placed at the service of health updated its ethical potential. As for the collection and dissemination of databases, a visual communication practice is able to evolve within an ethical framework to deal sensitively with the material.