Basic principles of the JUNTS methodology
The development of the JUNTS methodology follows a series of design principles that are identified and summarized below in Table 1.
In what follows, the five design principles underpinning the JUNTS methodology are outlined and exemplified by their application to a specific case: COMjuntos, a web app that includes specific communicative situations in which families feel they may not have sufficient resources to cope. The communicative situations addressed by COMjuntos are those that families encounter once their child has been diagnosed with a rare disease. They include, for example, the need to understand a medical report, having to undergo clinical tests, the search for additional resources, a doctor’s visit, and the search for support associations.
In COMjuntos application 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. The COMjuntos application is available 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://appcomjunts.es/wp-content/uploads/2018/11/ES-libro-COMJUNTOS.pdf
All versions of the COMjuntos application are available in open source ensuring they are accessible to the entire target population.
Principle 1: Design centred on patients’ needs
The active participation of patients is essential in the design of any intervention that specifically targets that group and is especially relevant in the case of those affected by a rare disease (5). In our model, we employ four strategies to harness patient participation as a method for identifying their needs and as an additional means for ensuring their involvement in the project: first, patients are interviewed in-depth; second, two focus groups are set up – in this instance, conducted on FEDER premises; third, a linguistic analysis is made of a corpus of real medical reports with the aim of identifying the factors that impede understanding (12); and, fourth, a survey is carried out comparing patient comprehension of a real report and the same report once it has been enriched linguistically and cognitively (13).
This methodology – adopting a user-centred design framework – is inspired by proposals made initially by Witteman (14). The framework, developed in response to evidence that a concept such as patient participation is overly ambiguous and subjective, is based on three elements: understanding the user, developing a prototype and observing how users interact with that prototype.
Application of the patient-centred design principle to COMjuntos
In the case of the COMjuntos app, to “understand the user”, we conducted ten in-depth interviews (15). 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 were tested, both by the experts (who had, in fact, participated in their design) and by patients and representatives of rare disease associations.
Principle 2: Persuasive design
Persuasive design in the field of technological applications has been defined by Fogg (16) as the scientific discipline that studies the characteristics and attributes of technologies, particularly those of the so-called new technologies, to support a change in user behaviour, that is, persuading them without resorting to either deception or coercion.
Subsequently, various authors, including Oinas (17), based on Fogg’s assumptions, have developed a complete system for the design and evaluation of online interventions aimed at promoting behavioural change: so-called Persuasive Systems Design or PSD (17). PSD classifies its design principles as support for carrying out the primary task (e.g. ensuring that the technology is simple and intuitive), support for dialogue (e.g. ensuring that the language is comprehensible and that the system strengthens the user’s social role), social support (e.g. ensuring that the user can observe how other people behave in the same situation) and credibility (e.g. ensuring that the system leverages roles of authority to enhance its validity). By applying this model to our app, we can systematically observe how the persuasive system design categories are used and investigate their possible influence on treatment adherence.
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 (17), elements of this model were incorporated to increase the degree of persuasiveness of our application, with the aim of encouraging parents to use it (18). 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, were 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 situations 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.
Principle 3: polyphonic and multichannel information design
Health issues are complex problems that can be addressed from very different points of view. Often, however, tools, applications and texts tend to be designed from a single point of view: either that of the doctor (medical report) or that of the patient. Here, by contrast, we argue that diverse voices (polyphony) on the same subject contribute to a richer and more complete perspective of the situation than that offered by any one individual voice.
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:
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.
Principle 4: specific treatment of linguistic and cognitive interferences
Not all the app’s users have the same communicative or information needs. Moreover, not all patients have the same sociocultural level or level of health literacy. For this reason, we propose a design that allows analysis and hermeneutics of the content at a range of levels.
Treatment of linguistic interferences in COMjuntos
Thus, the COMjuntos application 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 (19) (20). 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 (21), 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. In particular, 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.
Science that studies alterations of the DNA, both in genes and in chromosomes, using advanced techniques that allow an accurate diagnosis of some genetic diseases]
Principle 5: dissemination via specific channels
The application is based on the idea that its format should never constitute an obstacle for accessing health information. Sørensen (9) in relation to health literacy considers that:
Health literacy is linked to literacy and entails people’s knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.
In rare diseases, access to information, as a basic and essential element for improving health literacy (as defined by Sørensen), acquires critical importance. Therefore, we opted to implement the application in multiformats to guarantee the primary necessity of health literacy: namely, that people can actually access the information they need.
Dissemination via different channels and formats of COMjuntos
Since 2018, FEDER (Spanish Federation of Rare Diseases) 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: but, here, access to the tool is totally 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. In addition, there is a print version available for those who prefer to read the materials without using new 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.
 The bold is ours.