The web app COMjuntos: an example of application of JUNTS framework:
We aware that to describe a framework represent an abstraction itself. To help scientist to understand our framework design following we will offer a specific product created following the JUNTS: COMjuntos
COMjuntos is the outcome of a RECERCAIXA and ACUP research project carried out in conjunction with the Spanish Federation of Rare Diseases (FEDER) and with the technical support of healthcare professionals at the Vall d’Hebron Hospital in Barcelona. Linguists and psychologists worked alongside educational psychologists – experts in learning design – to develop an application that promotes family health literacy. The app provides content endorsed by health professionals (specifically, doctors and psychologists) and combines the use of controlled language with linguistic strategies adapted to the non-expert to facilitate understanding. COMjuntos was launched in 2018 and application is available in their 1.3 version (launched in June 2020) in different formats:
- In a downloadable app format for both IOS and Android devices
- In web format: http://appCOMJUNTOS.es/
- In book format, both printed and as a downloadable pdf: http://appCOMjuntos.es/wp-content/uploads/2018/11/ES-libro-COMJUNTOS.pdf
All versions of COMjuntos are available in open source ensuring they are accessible to the entire target population.
Application of the patient-centred design principle to COMjuntos
In the case of COMjuntos, to “understand the user”, we conducted ten in-depth interviews between January and June of 2017 in Hospital de la Vall d’Hebron and in the facilities of the Spanish Federation of Rare Diseases in Barcelona (12). Later, various working meetings were held with experts and representatives of FEDER associations, in which, in addition to contributing to content creation based on their personal experience, participants were asked for feedback on the contents being developed.
Likewise, to “observe how users interact with the prototype”, different versions of the first prototypes of COMjuntos were tested, both by the experts (who had, in fact, participated in their design) and by parents and representatives of rare disease associations. Specifically, they came from Spanish Association of Lowe Syndrome, Spanish Association for Lysosomal-Acid-Lipase, Association for Syndrome STXBP1, Spanish Association of Prader-Willi Syndrome, Spanish Association of Mucopolysaccharidosis. All of the participants were asked (video recorded in mobile app COMjuntos) to ask some specific general questions (not specifically about the disease of their kids) about: the first moment and feelings about diagnostic, how to manage the situation, how they prepare doctor test, what they would say to a “novel” parent about the role of the association, if they understand the medical report and how they act when they have doubts, how they use the ICT to manage their kids disease.
Application of persuasive design to COMjuntos
In designing COMjuntos, a first prospective analysis was carried out in which, based on the principles of the Persuasive Systems Design model developed by Oinas-kukkonen (13), elements of this model were incorporated to increase the degree of persuasiveness of our application, with the aim of encouraging parents to use it (14). Some of the more relevant elements included a modular design based on challenges to facilitate the consultation of information, the use of colour codes (see Figure 1) to simplify even further the information and the use of fonts of different sizes and formats to help distinguish between basic and more specific information.
Another persuasive element employed was that of the principle of authority (the PSD Authority Principle), achieved via the participation in the videos of the Vall d’Hebron Hospital doctors and researchers, internationally recognized teams specialising in minority diseases, psychologists and members of the FEDER board, together with the parents of the affected children. They recommend appropriate ways of proceeding and suggest certain strategies in their role as experienced witnesses (the PSD Suggestion Principle).
Finally, the language of the content was analysed to ensure COMjuntos and, above all, the modular structure of the application was appropriately simplified and readily understandable (PSD Reduction Principle).
We deemed it important that COMjuntos be made up of various modules that would help structure knowledge and the situations in which the patient might find themselves in real life. These modules, although they follow a certain chronological logic, do not need to be consulted in a linear fashion. Thus, the narrative thread of the COMjuntos app comprises five communicative acts that invite families to overcome certain situations they might find themselves in when having to communicate with a health professional. Adhering to the Reduction Principle, each module and all its contents are given a colour, as shown in Figure 1. Thus, green is assigned to Tenemos una enfermedad rara en la familia [We have a rare disease in the family]; yellow to Cómo preparar una visita médica [How to prepare a medical visit]; brown to Recibimos un informe médico [We have received a medical report]; red to Tenemos una prueba médica [We have a medical test] and, finally, purple to ¿Qué más puedo aprender? [What else can I learn?].
In turn, the different communicative situations are structured around a series of Challenges as shown in Table 2.
• We have a rare disease in the family
The day the doctor communicates to the parents the diagnosis or possible diagnosis of their child
What is a rare disease?
• How should we prepare ourselves for the medical visit?
When the family has a doctor’s visit
What do we want to achieve during the medical visit?
What can we do during and after the medical visit?
• We have received a medical report
When a clinician gives you a written medical report
What can we do to understand a medical report correctly?
When your child must have a medical test
What to ask the doctor when he sends your child for a test?
How to prepare your child for tests?
When we do not know what else can be done
How can I learn from other families?
Table 2: COMjuntos communicative situations and challenges
Application of the polyphonic design to COMjuntos
Each of the seven challenges comprises: a) a video with real testimonies from affected families and health professionals specializing in rare diseases (paediatricians, doctors, geneticists, etc.), b) a hypertext that explains the situation and anticipates the doubts that usually arise, c) a basic dictionary of medical terms designed for non-experts and d) information including tips and links to resources, videos, associations, stories, etc.
Each of the texts is presented via the typical questions that are raised in the corresponding situation, since in this way we can anticipate the concerns, or potential concerns, of the patient or family member. In Figure 2, one of the app’s screenshots shows a communicative situation with its two corresponding challenges:
[We have a medical test
What to ask the doctor when she sends my child for a test?
List of questions we can ask the doctor when she tells us our child needs a test.
How to prepare my child for the tests?
How to ensure our child is as stress free as possible when taking the medical test.]
To meet our objectives, members of the patients’ families, doctors, scientists, researchers and representatives of rare disease associations have all participated in the development of the application. Thus, in addition to calling on the expertise of all the researchers working on the JUNTS project, we have worked closely with the Spanish Federation of Rare Diseases and with doctors and researchers in the Clinical Genetics Unit of the Hospital Vall d’Hebron, who shared their experiences of having been in the different communicative acts addressed by COMjuntos. And although the vision is multiple (polyphonic), the message and objective are the same: to empower the patient.
In producing the videos – that is, the first level of access to each challenge – we opted for the polyphony of equal voices, so that each situation calls on the experienced voices of doctors, patients and relatives, association representatives, linguists and psychologists. In this way, each situation is always kaleidoscopic, which means we enrich understanding by drawing on the perspectives afforded by others: all are accredited voices albeit with distinct value. All these groups have experiences to relate in order to ensure that communication between families and clinicians is satisfactory.
Treatment of linguistic interferences in COMjuntos
Thus, COMjuntos can be consulted at different levels and so that each challenge can be addressed at the level of depth desired by the user:
- Level one: visual, by means of videos that introduce each of the communicative challenges.
- Level two: textual, by means of titles, general sections and specific sections that the user can drop down.
- Level three: hypertextual, by means of a dictionary of user terms and information in the form of hyperlinks to carefully evaluated and selected information available on the Internet.
In seeking to reduce linguistic and terminological interferences, we have taken into account the fact that users are not specialists in the health sciences. As such, they are likely to have difficulties in accessing the information transmitted by the professionals, since their cognitive structures in relation to health issues do not coincide. Several studies show that the use of terminology and the abuse of acronyms represent a major communicative barrier in this respect (15) (16). Consequently, one of the issues that requires most management in developing the application is the controlled use of terminology, that is the lexical units of specialized communication which tend to concentrate the most specialized information.
If our goal is to ensure that the language is not an obstacle for the patient (17), it is important to pay careful attention to the words used to speak about health issues and to be sure that they will be understood or, if it is likely they will not be understood, that the means are provided so that communication is not affected. For example, not using a particularly high terminological density in written texts (less than 12%), explaining unusual lexical units, not using abbreviations without first providing their full form, avoiding the use of loan words, etc. are elements that help construct more understandable texts.
In the application designed here, special attention has been paid to the language used. We have sought to control what terminology is used and how it is introduced and explained in the text. Thus, explanatory paraphrases are embedded in the texts, all abbreviations used are given their full expanded form, and specialist terms are hyperlinked to an ad hoc glossary with definitions appropriately worded for the non-specialist patient. The vocabulary can be accessed directly or through the text’s terminological units which have a hyperlink to the glossary (see Figure 3). The texts and the vocabulary have been prepared by the team’s researchers and reviewed by linguists, psychologists, doctors and geneticists.
Dissemination via different channels and formats of COMjuntos
As discussed, the health literacy of the population entails people’s knowledge, motivation and competences. The goal is to access, understand, appraise and apply information so that we can play an active role in our health and collaborate with health professionals to increase the quality of life of our children. COMjuntos is an important step forward in helping us achieve these goals. The application has the backing of FEDER, the Spanish Federation that supports patients and family members affected by a rare disease. Thus, the first step to ensuring the success of an application of this type is to facilitate patient access to it.
Since 2018, FEDER has recommended the application to its members via its home page. In this way, as well as certifying the quality of the application, COMjuntos is available to all users of its website. In addition, in 2018 COMjuntos was recognised as the best patient app at the e-Health Awards and this has helped further its dissemination (see Figure 4).
It is also important to ensure that users do not face any technological barriers in accessing information. Therefore, the application has been designed for use in different formats: app, web, print book and downloadable e-book. In addition, all videos are subtitled so that people with hearing difficulties can access the information. Another barrier is often the economic one. COMjuntos app is free. At the technical level, it was considered that in order to promote knowledge and the use of the application, it should be available, free of charge, in different formats adapted to any type of mobile device. A web version is also available that can be accessed from any internet browser: https://www.upf.edu/es/web/medicina_comunicacio/app-junts
In addition, there is a print version available for those who prefer to read the materials without using technologies. Finally, this book can also be downloaded in pdf format – the Spanish version being illustrated in Figure 4:
The app is light, occupying only 36 MB of storage space and consuming very few resources of the processor being used. Navigation is highly intuitive. COMjuntos is currently available in both Spanish and Catalan.