Since 2016, breast cancer patients at the Catalan Institute of Oncology have access to a virtual community for patients to address topics related to their disease. In this context, and with terminology as the object under study, this project aims to make specialized breast cancer knowledge more accessible to patients.
Since 2016, breast cancer patients at the Catalan Institute of Oncology have access to a virtual community for patients to address topics related to their disease. In this context, and with terminology as the object under study, this project aims to make specialized breast cancer knowledge more accessible to patients.
The three purposes of our study were a) detecting the information needs of breast-cancer patients, especially regarding terminology (through a linguistic-descriptive study and semi-structured interviews); b) creating a suitable terminology resource for the social-communicative context under study, which focuses on addressing the terminology; and c) evaluating this resource with the breast cancer patients. In this presentation we will focus on purpose number two: the elaboration process and creation of the informational terminology resource. So, the first objective is to present a new concept of infographics as an appropriate terminology resource: a terminology infographic -which revolves around terminology, and is also educational, interactive, and multilayer. We will detail the development of the inclusive method we have used to make the infographic, which combines classic infographics and terminology work. This combined method includes essential phases both from terminology work and infographics and follows the methodological principles and terminology work phases suggested by Cabré (1999) [1]. So, we kept in mind the Adequacy Principle of the Communicative Theory of Terminology (CTT), which we consider to be the backbone of any terminological application; also, we consider some of the proposals of the Socio-cognitive Theory of Terminology (STT), especially the ones regarding the impact that the type of message, sender and receiver and the level of specialization have on specialized communication. These aspects will influence on the information considered important when deal with terminology [2]. Our method also includes fundamental plain language criteria, adapted to the specific communicative situation within the field of doctor-patient communication.
1st International Conference on "Multilingual digital terminology today. Design, representation formats and management systems", June 16 -17, Padova, Italy EMAIL: laia.vidal@upf.edu (L. Vidal-Sabanés); rosa.estopa@upf.edu (R. Estopà)
The second objective is to detail the resource's principal characteristics. The four key features of our infographic -terminology-based, multilayer, digital and interactive, and educational-make this resource a singular tool. The fact that it explains a story, is based on a terminology tree structure, and focuses on terminology processing are innovative aspects that contribute to the understanding of specialized knowledge. With respect to terminology, the terms have been identified an extracted with TERMINUS 2.0 (a terminology extraction tool) from a corpus of different kinds of documents, among which there were documents on the breast cancer subject aimed at patients. In fact, all the terms in the infographic belong to the Vocabulari multilingüe de càncer de mama per a pacients [Multilingual vocabulary of breast cancer for patients] [3] which we have elaborated in a prior phase to infographics [4]. This dictionary is currently in the process of being published.
The fact that the infographics is multi-layered is also a unique aspect, given that it not only includes secondary infographics, but also gives the user access to different levels of knowledge, either through the definition, illustrations, synonyms, terms related by topic, etc. We have also seen that most infographics in the field of health are static: thus, making the resource interactive not only allows us to deliver the information at the different levels mentioned, but also engages users and involves them in the writing and understanding of the material. Finally, the fact that it is educational means that it is appropriate for our objectives, since the instructional component is inherent to the concept of infographics, to offer complex information in a more understandable way.
The most important aspect of our terminology infographics is that they do not avoid key terminology in the field (which was the concern of the patients), but rather explain or define it. At the same time, the visual support they contain, together with other techniques such as managing (instead of avoiding) variation, examples, or information architecture so that terms are related by topic are also aspects that contribute to reading comprehension.
Finally, we will present a terminology infographics prototype on breast cancer treatments. This prototype is structured by a main, general infographic of breast cancer treatments and a series of secondary infographics that refer to different treatments. For the prototype, we only developed the chemotherapy section.
From our study emerge three main contributions. In the first place, within the framework of the CTT, this dissertation ratifies the importance of the Adequacy Principle when designing a terminology application, which stems from the specific needs of users and the communicative situation. We have seen throughout our work that the communicative situation and the needs of our users are particular (they are not experts, but have some knowledge on the subject), given that they are different to the users and situations considered at the core of the CTT. In the second place, our second contribution refers to the inclusive method we have used to make the infographic, which combines the most important phases of the terminology work and the most relevant phases of infographic production. Finally, this work contributes with a clear social orientation: the terminology infographic aimed at breast cancer patients that we have designed, programmed, and evaluated. This resource will help patients increase their understanding of healthcare information, specifically the terminology related to breast cancer treatments. In this sense, the evaluation studies performed in the third phase of the study -an evaluation survey sent to breast cancer patients and application of the PEMAT guideline [5]-verifies that terminology, which up until now had been perceived by patients as an obstacle to understanding, becomes a bridge between specialists and patients although, as we said at the beginning, in this presentation we will not delve into this aspect.
[1] Cabré, M. T. (1999). La terminología: representación y comunicación. Elementos para una teoría de base comunicativa y otros artículos. Barcelona: Institut Universitari de Lingüística Aplicada.