Infographic Interventions: Co-creating brain injury infographics with members of the Brain Injury Association of Peele-Halton

By Michelle Charette, with Elizabeth Abols and Mark Stajduhar

In clinic waiting rooms, online health forums, social media websites, and on public transport vehicles, information graphics, more commonly referred to as infographics, are a popular way of sharing health information. Infographics usually combine visual representations of information (shapes, charts, illustrations, photographs, bold fonts and colors) with written text to communicate complex information in an attractive and comprehensive way. Some of us might recall leafing through or reading infographics pinned to bulletin boards while waiting for our names to be called at the doctor’s office. Today, digital infographics circulate widely across social media sites and online support groups for patients living with various health conditions.

As part of our broader commitment to exploring arts-based methods in brain injury research, our research team organized a six-part brain injury infographic workshop series with the Brain Injury Association of Peele-Halton (BIAPH) Youth Support Group, ‘Headspin’. The aims of the workshop were two-fold: 1) to explore brain injury infographics alongside people living with brain injuries, and 2) to facilitate the co-creation of brain injury infographics with the help of a local artist. Before jumping into the results of the workshop, below I (Michelle Charette) present a brief background of infographics in public health, and the ethics of designing health infographics.

What are Health Infographics?

Infographics play a role in the dissemination of public health research. This includes research about the causes of and treatment of illness, the need for greater research funding for health initiatives, how to support people who are living with health challenges, and more. They can be useful in contexts where medical professionals and government agencies (think of the World Health Organization or Health Canada) need to communicate important information to diverse audiences with varying health literacy levels and who speak different languages. Infographics rely on data visualization: the representation of data through use of common graphics, such as charts, plots, illustrations, tables, and even animations.

Illustrations in public health and epidemiology have a long history. The 19th Century English physician John Snow drew dot-maps of London to better understand and disseminate information about the cholera outbreak (McLeod 2000). William Farr, a British doctor and government official, also used data visualization to understand the patterns of cholera outbreaks in the 1840s. Florence Nightingale’s notable contribution to data visualization can be found in her distinctive “coxcomb” or “rose” diagrams (Sherlock 2019). She drew circular charts, divided into twelve segments, representing monthly fatalities at Scutari from April 1854 to April 1856. The segments are color-coded: blue signifies deaths from disease, red indicates deaths from battle wounds, and black denotes other causes.

Fig 1: Florence Nightingale. Diagram of the Causes of Mortality in the Army of the East, 1858.

Anthropologists have paid particular attention to ambiguities that emerge when images and graphics are used to communicate public health information (about smoking, HIV, and maternal health, for example). These are often health warnings (as prevention, like wear a helmet when snowboarding or biking). Sometimes they are meant to educate (signs of a stroke, or signs of a concussion to look out for). Stacy Pigg’s work on HIV in Nepal examined the ways in which AIDS pamphlets shaped public understandings about infection and prevention (2002) as they moved from the Global North to Nepal, and through multiple institutions and power arrangements. Her research found that many concepts and terms used in the US and Canada did not translate to local understandings of HIV in Nepal. Simone Dennis (2013) and Kirsten Bell (2020) have paid particular attention to the imaging and infographics associated with cigarette packaging and anti-smoking campaigns. Dennis’ work importantly illustrated how some messaging might be interpreted (and taken up) quite differently from the intended message (2013). Margaret MacDonald (2019) examines infographics in maternal global health campaigns and the ways in which hope, and possibility are dominant narratives, signalling a move away from (maternal and infant) death and suffering.

Like these scholars, we are interested in exploring how brain injury infographics reinforce ideas that are neither positive nor negative but culturally and environmentally situated. Infographics are powerful, but not necessarily ideal, tools. They sometimes produce misleading conclusions when the variables mapped are too broad or disparate. An anonymous reviewer of Nightingale’s roses wrote: “It is sad to see a work of so much value – full of such useful information – disfigured by a few serious and elementary mistakes” (Iezzoni 1996, 1082). This is the double-edged sword of infographics. To safeguard against these risks and others, our research team turns to research-creation (Loveless 2019).

Co-Creating Infographics

Within healthcare and beyond, infographics can be powerful tools for advancing important messages. Because of this, they carry significant ethical risks, particularly in terms of data manipulation and misinformation. Examples of this include selective data representation, misleading visual emphasis, or the oversimplification of ideas. This is especially worrying in contexts where individuals already face stigma, as public health campaigns can use data to evoke emotional reactions and reinforce biases. They can also encourage unpredictable behavior. A ten-year anthropological study of smoking in Australia suggested that images of fetal harm on cigarette packaging led to more smoking, not less, as young women thought it might reduce the birthweight of their babies (Dennis 2016).

As readers of the blog might already be aware, our research collective is driven by a commitment to arts-based and experimental approaches to research practices. To think about brain injury infographics, and safeguard against misrepresentations and exclusionary research practices, we utilized an approach called research-creation (Loveless 2019). In research-creation, we spend as much time thinking about the research design and process as we do the results. Furthermore, research-creation tries to experiment with methods that invite broader audiences to shape the dialogue. Research-creation is characterized by several goals: sharing power in the research settings (the research is jointed owned, and people work together to achieve a joint understanding); diversifying and sharing research skills and perspectives (making sure that everyone in the research team is able to contribute); valuing members of the research team equally (regardless of their academic, employment, or disciplinary background); reciprocity in the research output (everyone benefits equally from the research); and 5) the building and maintaining of collaborative relationships (Heaton et al. 2015).

By asking questions that are under-explored, using creative methods (like art), and incorporating voices that are left out of mainstream conversations, research-creation fosters entry points for exploring and expressing aspects of brain injuries that are not captured by so-called ‘traditional’ scholarly methods. Further, these approaches can democratize participation in research across demographics and thus leads to greater and more complete knowledge. Inspired by the traditions of critical scholarship (feminism, postcolonial, cultural studies, etc.), research-creation is concerned with who gets to produce knowledge within a society and how (Loveless 2019).

The Workshop

As part of an ongoing collaboration between our research team and BIAPH, I organized a six-part workshop series. Over the course of six two-hour sessions, I met with Headspin members to explore and craft brain injury infographics.

Our database contains 1,000 images in 21 languages, sourced from a variety of government, non-government, and private organizations. These images are shared across websites, social media platforms, and in printed documents. The collection includes samples from various sites, organizations, groups, and clinics. Some images come from social media support groups and awareness campaigns on platforms like Facebook, Twitter, Instagram, and Tumblr. Other materials are from public health organizations such as the World Health Organization, US Centers for Disease Control, US & Canadian Brain Injury Alliance, and specialized foundations or groups like the Canadian Fetal Alcohol Spectrum Disorder research network and the International Bureau of Epilepsy. Additionally, some materials target specific audiences, including soldiers (via the US Military Health System) and women affected by intimate partner violence (through the Violence Against Women network). The collection also includes materials from hospitals, clinics, charitable foundations, nonprofit groups, and personal injury law firms.

Fig 2: Michelle and members of BIAPH Headspin at the final meeting. 

In the weeks leading up to the workshop, I chose approximately 40 infographics from this database and grouped them across six themes: prevention, anti-stigma, recovery, age-specific information, gender-specific information, and patient advocacy.

To accomplish the second goal of the workshop, we reached out to Toronto-based designer and artist Marcia Diaz to help with the final illustrations. As organizer, I shared notes and brainstorming images from members of the workshop with Diaz, who used these to build out drafts of novel infographics. Diaz joined members of the workshop in the fourth session to show her drafts and receive additional feedback and guidance from the members. Over several exchanges, members and Diaz co-produced eight original infographics. These serve as both a critique of existing materials and a resource for improving future infographic designs.  

Results

At the beginning of the workshop, members were provided with sketchbooks and writing materials so that they could take notes and brainstorm their own infographic designs. During each session, BIAPH participants responded to prepared prompts and poignant moments of discussions in their sketchbooks. These notes and drawings would go on to inform the design of their own infographics.

The first several meetings involved looking at brain injury infographics pulled from the database. We discussed these images, noting what formatting choices were liked and disliked, what messages were foregrounded, and what messages were inaccurate or misleading. We also discussed what might be improved in each. At each session, members of the workshop were asked to discuss who they thought each infographic was made for. The answer was not always clear. For example, in the prevention infographics, some seemed designed for people who already had sustained or acquired a brain injury, while others seemed like they were for people who had not. Members were asked to comment on the use of color, text, and shapes in infographics. They critiqued infographics that relied heavily on text, graphs, and stick-figures to represent real individuals.

Members noticed that prevention-oriented infographics for brain injury awareness sometimes used language that (perhaps inadvertently) placed the blame on individuals for injuries. They reflected on the difficult fact that not all brain injuries are preventable. They designed an “anti-prevention” infographic that captured the spirit of this limitation (Fig. 3).

Fig. 3: A draft of the “anti-prevention” infographic created by Headspin members. The final infographic is on the right.

Members believed that recovery-oriented infographics should emphasize the ongoing and unpredictable nature of recovery. One member told us that, for her, recovery is “always one step forward, three steps backwards”. She recounted a story of her mother asking her care team when her daughter would get better, and that the medical team being unable to answer this question. It’s all “unknown”, she said. In the spirit of diversifying the message and grounding the lived experience of BIAPH members, both participants created their own Life Story infographic (Fig. 4). This style of infographic moves away from the goal of educating universal guidelines towards sharing heterogeneous stories of real people living with brain injuries. 

Fig. 4: A Life Story infographic that captures the experience of one member being what she called “medically gaslit”.

In anti-stigma infographics, members noticed that forms of anti-stigma were seldom demonstrated. One infographic showed hands pointing at another person (Fig. 5), a vague representation of stigma that members felt could be applied in multiple contexts. Members highlighted the importance of demonstrating precisely what discriminatory practices look like and how to be supportive to people living with brain injuries. They shared that anti-stigma infographics should show concrete examples of the types of discriminatory practices faced by people living with brain injuries (Fig. 6), and concrete practices for supporting these individuals.

Fig. 5: An anti-stigma infographic that members felt was vague.

Fig. 6: An infographic that gives a concrete example from one member’s life of the kind of stigmatizing behavior that people living with brain injuries face. A draft image is on the left, which informed the infographic on the right.

Concluding Thoughts

Many existing infographics fail to capture the diverse realities of those living with brain injuries. How do people living with brain injuries respond to popular themes in brain injury infographics? How might researchers work with affected communities to intervene on knowledge translation practices? Our project aimed to address this gap by working directly with BIAPH Headspin members.

Visual materials are widely used in public health and neurological care to communicate complex information to family members, medical staff, and the public. Leaving aside questions about the persuasiveness of infographics, given that they are in-use, we are committed to improving the degree of patient involvement in the research that informs such tools. Scholars writing on this subject have articulated the need for designers to adopt transparent methods, provide clear data sources, and use visual images responsibly to ensure viewers can interpret information accurately (Rendgen 2019). But who gets to shape health infographic messages? Who decides what data is visualized, and how? I believe that it is insufficient to set out ethical guidelines for infographic designers to follow (see GRAPHIC guidelines as an example). Researchers designing infographics should also seek out active collaborations with the individuals who receive the messages and know about the matter first-hand (see Kaviani and Salehi 2022 for an example outside of the health context). Working with BIAPH Headspin members revealed important tensions and possibilities for using infographics to communicate about brain injuries.

References

Bell, Kirsten. 2020. “Signs, Things and Packaging: Recovering the Material Agency of the Cigarette Packet.” Social Studies of Science 50 (1): 30–49. https://doi.org/10.1177/0306312719876995.

Dennis, Simone. 2013. “Golden Chocolate Olive Tobacco Packaging Meets the Smoker You Thought You Knew: The Rational Agent and New Cigarette Packaging Legislation in Australia.” Contemporary Drug Problems 40 (1): 71–97. https://doi.org/10.1177/009145091304000105.

———. 2016. Smokefree: A Social, Moral and Political Atmosphere. London: Bloomsbury Academic.

Heaton, Janet, Jo Day, and Nicky Britten. 2015. “Collaborative Research and the Co-Production of Knowledge for Practice: An Illustrative Case Study.” Implementation Science 11 (1): 20. https://doi.org/10.1186/s13012-016-0383-9.

Iezzoni, Lisa I. 1996. “100 Apples and 15 Red Herrings: Making Sense of Risk Adjustment.” Annals of Internal Medicine 124 (8): 767-769.

Kaviani, Darya, and Niloufar Salehi. 2022. “Bridging Action Frames: Instagram Infographics in U.S. Ethnic Movements.” Proceedings of the ACM on Human-Computer Interaction 6 (CSCW1): 1–43. https://doi.org/10.1145/3512926.

Loveless, Natalie. 2019. How to Make Art at the End of the World: A Manifesto for Research-Creation. Durham: Duke University Press.

MacDonald, Margaret. 2019. “The Image World of Maternal Mortality: Visual Economies of Hope and Aspiration in the Global Campaigns to Reduce Maternal Mortality.” Humanity: An International Journal of Human Rights, Humanitarianism, and Development 10 (2): 263-285.

McLeod, Kari S. 2000. “Our Sense of Snow: The Myth of John Snow in Medical Geography.” Social Science & Medicine 50 (7–8): 923–35. https://doi.org/10.1016/S0277-9536(99)00345-7

Pigg, Stacy L. 2002. “Languages of Sex and AIDS in Nepal: Notes on the Social Production of Commensurability.” Cultural Anthropology 16 (4): 481–541.

Sherlock, Amy. 2019. “Florence Nightingale’s Rose Diagram.” Maharam Stories, August 14, 2019. https://www.maharam.com/stories/sherlock_florence-nightingales-rose-diagram.