"The ComJunts app offers peace of mind to families that have a child with a rare disease"

 

A doctor in Linguistics from Pompeu Fabra University (UPF), where she is a tenured professor in the Translation and Language Science Department, Rosa Estopà i Bagot (Santa Susanna, 1969) is currently coordinator of the Online Master's in Terminology (UPF) and a researcher with the Institute of Applied Linguistics (IULA). She has also been a consultant with the Universitat Oberta de Catalunya (UOC) since 2009 and a professor in the Learning Difficulties and Language Disorders specialization on the University Master's Degree in Learning Difficulties and Language Disorders.

An expert in speech therapy, she has worked with the UOC for the last three years on the Junts project thanks to RecerCaixa fellowships, which La Caixa awards in conjunction with the Government of Catalonia. One of the key results of this collaboration is the creation of the ComJunts app, aimed at helping families of children with rare diseases to be in contact with the specialists treating their children, in what is often a difficult communicative interaction. She has also published the Primer diccionari de medicina il·lustrat (First Illustrated Medical Dictionary; Publicacions de l'Abadia de Montserrat, 2018) as part of the Jugant a definir la ciència (Playing at Defining Science) project, in which Estopà and her team have enlisted the help of 1,200 Catalan children in defining and illustrating over 350 medical words and concepts.

 

 

A doctor in Linguistics from Pompeu Fabra University (UPF), where she is a tenured professor in the Translation and Language Science Department, Rosa Estopà i Bagot (Santa Susanna, 1969) is currently coordinator of the Online Master's in Terminology (UPF) and a researcher with the Institute of Applied Linguistics (IULA). She has also been a consultant with the Universitat Oberta de Catalunya (UOC) since 2009 and a professor in the Learning Difficulties and Language Disorders specialization on the University Master's Degree in Learning Difficulties and Language Disorders.

An expert in speech therapy, she has worked with the UOC for the last three years on the Junts project thanks to RecerCaixa fellowships, which La Caixa awards in conjunction with the Government of Catalonia. One of the key results of this collaboration is the creation of the ComJunts app, aimed at helping families of children with rare diseases to be in contact with the specialists treating their children, in what is often a difficult communicative interaction. She has also published the Primer diccionari de medicina il·lustrat (First Illustrated Medical Dictionary; Publicacions de l'Abadia de Montserrat, 2018) as part of the Jugant a definir la ciència (Playing at Defining Science) project, in which Estopà and her team have enlisted the help of 1,200 Catalan children in defining and illustrating over 350 medical words and concepts.

 

The starting point of the Junts project, which ran from 2016 to 2019, was a real social problem; namely, that patients don't understand healthcare staff, which leads to them suffer feelings of anxiety and helplessness. We've seen from the interdisciplinary team involved in the project and from the results of other studies that information and communication in health matters are extremely important, but there is a lack of understanding. An additional problem to this in terms of Spain is the general low level of health literacy. The Horizon 2020 programme works towards the same goal: greater literacy in health matters so that people can make their own health-related decisions.

Given my background as a linguist, it occurred to me that we could study medical reports, which are the most common form of health communication. We all get medical reports, and even though doctors give them to us without any more ado, to us they're a big deal because we're hoping to find out what it is we've got. So what happens is, we read them and we don't understand a thing, so we go on the internet, where the information isn't filtered or targeted. In the end, we don't understand what we do find and that just leads to more anxiety.
Health information is very important, even more so with rare diseases. That's why, knowing that most rare diseases start in childhood because they're genetic, we decided to focus on rare paediatric diseases to create a tool that could be to the benefit of society. We got in touch with the Psychology, Health and the Net (PSiNET) team, led by Dr Manuel Armayones, to complement the skills we brought to the table. They conducted the interviews with the families, and between us we came together to create the app.

Right from the start, we knew that neither the format nor the information should be an obstacle. We wanted something that was practical, up to date and quick. In fact, the resource comes in various formats: the app, a digital and a print book, and a website. The information had to solve the doctor-patient communication problem, so the app guides and accompanies families in communicative situations during the initial stage of the disease (the first 2 or 3 years), when they're not used to talking to doctors. When we began considering the content of the app, we had to find out what the most anxiety-inducing situations were. Our aim with the app was to anticipate them and make sure the families didn't feel alone or helpless, which can be typical of the doctor-patient relationship, where the doctor has the knowledge but the family doesn't. This gap is even wider in the case of rare diseases, which means that families are afraid to speak up or ask questions, when they have every right to do so.

Thanks to the in-depth interviews with the families that Dr Armayones' team carried out, we were able to discern their greatest concerns. Parallel to this, we asked for the children's medical records and selected a number of reports to study them from the linguistic and discursive point of view. That way we were able to see the exact terminology, the number of abbreviations and the density of terminology that they contained. This enabled us to determine how difficult it was to read a medical report, and once we'd found what it was that was an obstacle to understanding, we enriched the report by explaining everything. Simplifying a report can make families think that you're hiding information belonging to them and that they need so they can be empowered, even when they don't understand it.

<p>We expanded on all the abbreviations, we enriched them syntactically, we added a definition of the diagnosis with the patient in mind, and we clarified the instructions for treatment. We then sent it to the families, where we saw that even the person with the lowest level of education could understand it. This is in contrast to the original report, which not even the family member with the highest academic education could understand.</p>

The app helps and guides communication in health matters, which is the first step towards raising the level of health literacy. Literacy really only means educating, having more knowledge at your fingertips to be able to decide with the healthcare professionals on what's happening to you. However, to be able to have a good health education and make decisions about your own health, you need to understand the information, and to be able to do that, you need to be able to understand the doctor, both in person when you have a check-up and in writing, when you get a report, for example.

The app is organized around 'challenges' that consist of questions we ask ourselves as patients or family members in a situation like this. Each of these challenges is framed within a specific communicative situation. The choice of situations emerged from our study of the interviews with family members and focuses on the ones where we'd all feel anxious, such as reading a report or going for a check-up. Other studies also point to them as problematic situations. Also, as we don't all have the same needs or skills, we decided to organize the app in different levels of information and registers.

Since everyone looks for something distinct, we worked on four levels: audiovisual, headers, text and hypertext. The first one, the audiovisual level, is easy to access, especially so in a society like today's. If you want, you can simply try the visual route, which is made up of seven videos. As well as the level-based structure, the app is also polyphonic and interdisciplinary. We wanted different voices to talk about the same problem, particularly a complex one like this, so we have healthcare professionals (a doctor or a geneticist), self-help associations (led by the Spanish Federation of Rare Diseases (FEDER)) and researchers. The multiple voices enrich the app's content.

We know that there are medical teams that are prescribing the app, and FEDER is recommending it. In this question of communication, two sides are involved. Firstly, we need to raise the health education of families, giving them the tools to empower themselves; and secondly, we need to make healthcare professionals aware that their patients don't always understand them. Although the app isn't intended as training for doctors, they can use it to consider how they work.
The studies prior to creating the app were aimed at doctors, and there are, in fact, two books that are about to be published: one on the study of the language of medical reports, which is being published in the last week of February by the Italian Hospital in Buenos Aires; while the other, published by the Esteve Foundation, is intended for trainee healthcare professionals, showing how they can improve the way they write texts to make them more easily understood. Although it's true to say that professionals don't have a lot of time to write reports, this can easily be improved with good training.

When we were creating the app, we had the advice of Vall d'Hebron Hospital's Genetic Medicine research group into rare diseases led by Dr Eduardo Fidel Tizzano Ferrari, so medical staff were involved in it. The app has been very well received, as is borne out by its being chosen as best app for patients at the eHealth Awards 2018. The award was really exciting as it showed that we'd achieved our aim: an app for patients and by patients. We didn't want it to be stuck in a laboratory, but for it to reach as many people as possible. That's why it's free, in multi-formats, and in Catalan and Spanish. We're doing our bit in the fight against rare diseases, which is not to say it's the cure-all.

We tackle this question in the app because it's the first one that the families affected ask. Should we say rare, minority, infrequent or low-incidence? In Catalan, we've tended to use minoritat, whereas in Spain and internationally, 'rare' is more commonly used. The problem here lies in the fact that 'rare' has a pejorative connotation in Catalan because we've mistranslated the concept from the English. Whichever one you use, the label means no more than the significance we give it, and they all mean the same thing: a disease that few people have, with consequences that haven't been highly studied and for which there are few resources.

I'd day that the app is pretty much complete, but there are always improvements you can make. We could reduce the texts and increase the hyperlinks, or add more communicative situations. Despite this, when we designed the app, we saw it as a timeless resource, one that would last beyond just the immediate future. What we do want, and there are groups working on it, is for the model to be exportable to other types of diseases just by changing the content.

Absolutely. It's still very early and we haven't thought how to conduct the study, but assessment is always a good thing; it lets you see what you've done well and what you haven't, or what level of information reaches the users. All of the data we can gather will be very valuable. For the time being, we have some idea and some data, but nothing we've interpreted yet.

Peace of mind. The app offers peace of mind to families that have a child with a minority disease. As I mentioned, the doctor-patient relationship is unequal, and families feel insecure and helpless, but they want to know and understand what it is they're facing. They need it to be active. The families will be the carers for these people. They'll have to be involved, so they need information to be able to understand, discuss and take part. In short, to be empowered. The aim of the app was to normalize the feeling of uncertainty they have. That's why we offer small solutions and strategies to focus on the communicative situations in which they'll be involved. We also offer resources to solve any queries that may arise, such as links to dictionaries that define the terms that are abbreviated in medical reports.