Communicating Face Transplant Policy and Practice

Sarah Hall explores the communication of policy and practice of face transplantation using infocomics for public audiences.

What would happen if you lost your face? This is the opening question to our infocomic version of the Blueprint for Sustainable Face Transplant Policy and Practice. The infocomic is aimed at a broad public audience, and summarises the key findings of the report that resulted from the Policy Lab that AboutFace held with King’s Policy Institute in December 2021.

Four panel diagramme exploring barriers to accessing face transplantationsWe ask this question because it helps to bridge the gap between patients, doctors, families and community members. There have been fewer than 50 face transplants carried out around the world, including two retransplants, and none as yet in the UK. Because this is a surgical procedure that affects such a small proportion of the world’s population, relatively little is known about it outside of clinical spaces. What the public does learn typically comes from the news media. In the news, accounts vary significantly in tone: some are graphic, sensationalist accounts, while others focus on hailing surgical innovation and excellence. What these published pieces rarely reveal, however, is the extensive journey that patients go through, or how they feel about their experiences (Bound Alberti, 2020). Therefore, the public receives a limited account. They are distanced from face transplants and transplant patients. These surgeries are something that happen to other people. For most of us, they appear to lack immediate relevance.

Our Blueprint is aimed at clinicians, but one of its core components addresses public perception and the way that the media represents face transplants and patients. At AboutFace, we felt that it was also important to use the Blueprint to contribute to public understanding about the wider implications of face transplantation. It presented an excellent opportunity to communicate to the public a more detailed picture of what a face transplant is, and what is involved in the full process from patient assessment through to lifelong aftercare.

One of the key goals for AboutFace – having published the Blueprint for Sustainable Face Transplant Policy and Practice (Bound Alberti, Hall, Pow, Sreenan & Ridley, 2022) – is to ensure that its findings are widely available and not just for surgeons. While face transplants may seem like something distant, the core ethical issues amount to something much closer to home: general encounters with medicine and medical practice. We make decisions as a society about what kinds of medical interventions are acceptable and which are not. This is not possible if the public does not have all the information they need to make an informed decision. Moreover, while individual people may not feel that face transplantation has an immediate impact on their lives, it is now considered an exceptional ‘viable option’ (albeit in very specific circumstances). Therefore, individuals must be given the opportunity to consider the implications of giving and receiving faces for themselves, and for their loved ones.

Yet, delivering this message is not straightforward. We want to engage a public audience, but how do we reach them? Our website and social media will be our primary channel for disseminating the findings of the report, through a series of blogs, and targeted social media content to raise the profile of the Blueprint. But the published report itself is clinically focussed and aimed at surgical teams. And the reality is that the questions raised during the Policy Lab, and the issues set out in the Blueprint, are complex. We are seeking to introduce intricate ethical debates to an audience that has a limited knowledge of what a face transplant actually involves for the patient or the clinical teams performing it.

Infographic of physical and emotional effects of face transplantationSo we approached Nifty Fox Creative, a team specialising in disseminating complex ideas to a lay audience, to work with us on developing a suite of resources that will enable us to communicate our findings effectively, succinctly, and in a format that promotes understanding. We sought a creative collaborator for this task to help us to overcome some of the challenges that we have consistently faced in our public communication about face transplantation. Language (face transplantation as a topic has an inherently clinical vocabulary), tone (the subject is sensitive, and potentially upsetting or uncomfortable), and image use. Images are particularly tricky because while the sensationalist media attention around face transplants shows clearly that there is a public interest in the topic, medical photographs pose ethical challenges about our duty of care to those in the photos. Instead, I wanted to develop visual media that would be meaningful, that would help us tell the story of our research, overcoming the challenges of language and tone in the process.

With Nifty Fox, we decided to use art and design to create an impactful narrative through comic-style representation, one that makes complex medical knowledge accessible to a broad audience. As a result of the collaboration, we have created four outputs: an ‘infocomic’ that summarises the key findings of the Policy Lab and the resulting Blueprint; a set of graphics that we can use to share those findings on our social media platforms; a short animation, introducing people to the research that Fay is undertaking on AboutFace; and a full-length, interactive version of the published report, for those who want to learn more.

Infographic that debunks the myth that face transplants are science fictionThese resources will enhance understanding and encourage people to pay attention. Graphic depictions make it significantly easier for us to get to the heart of why our Blueprint matters not only to medical professionals, patients and their families, but to a wide public audience. Instead of overwhelming audiences with jargon, complexity, and data, graphic design enabled us to address core issues simply, increasing our chances of making a difference. For example, one of the critical entry points to our research is understanding that face transplants are not science fiction, and that they are significantly more complex than fiction might have us believe. We use the film Face/Off (1997) to represent this in both the infocomic and one of our social media assets, as one of the most recognisable popular culture representations of face transplantation. This way, we reach audiences via a familiar reference, and at the same time move decisively away from showing graphic photographs of face transplants or transplant patients

Visual tools also help us to illustrate inequalities, tensions, and ethical issues. Visual media are proven to make ideas easier to digest, and by using them we are able to get to the heart of the matter quickly and effectively, thereby keeping the audience engaged with the core ideas. One of the most important factors for us when developing these materials was to create a version of the report that was succinct, accessible to an audience with no prior knowledge of face transplantation, and that made clear why the Blueprint is important for ensuring best practice. The layout of the infocomic vastly reduces the quantity of text that readers need to engage with. It summarises each of our six Blueprint themes in just two or three points, each one supported by a graphic, and then sets out what needs to change. Each theme covers just one page, making for readily accessible and digestible information.

Infographic discusses patient and financial support for face transplantationThe short animation that Nifty Fox created will be a logical starting point for most people upon finding our social media or website for the first time. It opens with the same question as the infocomic: ‘what would happen if you lost your face?’ It asks viewer to think about what the media does not show about face transplantation: the emotional experience of the patient and the donor family; the inequalities in race and gender; the socio-economic impacts on patients and their support networks; and the anti-rejection medications that patients need to take for the rest of their lives. Imagery is very important because we are addressing sensitive and pressing themes, such as organ donation. It is essential that we speak about donation if we are discussing the sustainability of face transplantation, but our position is not to influence people either in favour of organ donation or in opposition. Our aim is to provide the knowledge that audiences need to enable them to make informed decisions. Depicting the donation of a face in the animation required a careful balance of demonstrating the seriousness of the subject, but stopping short of making organ donation seem unduly distressing. We wanted to show a clinical setting, and chose an abstract depiction of a face being lifted from a hospital bed. This abstract image of a face is used throughout the animation, and made it possible to explore the idea of the face as an organ linked to identity and emotion, without relying on realistic or photographic images of disembodied faces or transplant recipients.

Both the animation and the infocomic go on to pose the following questions: would you give a face? Would you receive one? These questions are critical entry points to the research that AboutFace does. They are emotive and arresting, bridging the gap between research and engagement. By making the subject feel more immediate to the audience, they prompt individuals to respond to significant questions in a language and format that feels closer to home. We hope that these outputs will aid public understanding about face transplantation, the ethical, clinical and social issues that it raises, and to feel empowered to contribute to conversations about medicine, and their faith in that medicine and medical practice.

About the Author

Sarah Hall is Public Engagement and Events Officer on the AboutFace Project. She is interested in academic outreach and engaging with creative methods for disseminating academic research to different audiences. She is also an historian of seventeenth century puritanism, with expertise in digital humanities methods. More broadly, this has generated an interest in the histories of ‘ordinary’ people and their lived experiences. She brings this interdisciplinary experience to the AboutFace Project. Keep updated on the AboutFace Project on Twitter and Instagram and follow Sarah’s work on Twitter and Instagram at @SarahK_Hall.

References

Bound Alberti F. ‘Face transplants as surgical acts and psychosocial processes’ Lancet. 2020;395(10230):1106-1107.

Bound Alberti F., Hall S., Pow R., Sreenan N. & Ridley, M. ‘A Blueprint for Sustainable Face Transplant Policy and Practice’ 2022.

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