JUNTS framework for creating web apps to bridge the gap in doctor-patient communication: the case of COMjuntos application in the eld of rare diseases

Background. The diagnosis or even the suspicion of a disease on their children has an emotional impact on their parents and generates a need to acquire relevant knowledge and skills in a short period of time. For a range of motives, these parents will sometimes face communicative and cognitive barriers in their communication with the professionals that care for their children. These barriers can have a negative effect on knowledge acquisition, treatment adherence and, more generally, affect their relationship with clinicians. To overcome these barriers, we developed JUNTS framework following three steps: carrying out 10 semi-structured interviews with parents of child’s affected by a rare disease. Secondly, we carried out interviews with health professionals and patient’s organization staff. The third and last steep was to organize a meeting of the whole research team and patient’s association staff of Spanish Federation of Rare Disease and list a set of design trends that could help parents to solve the main communicational and linguistic barriers. Results. The JUNTS Framework presented here helps parents manage the communicative situations they nd themselves in the relationship with health professionals, by exploiting a polyphonic design that includes different levels of involvement. One of the characteristics that makes this approach particularly unique is that parents and representatives of patient-support associations work jointly with health professionals, psychologists and language experts in designing the contents of a parents-support application. The Framework exploits a modular structure centred around a series of short challenges with different types of user involvement (visual, textual and hypertextual). For optimal adherence and to ensure patients complete the whole route through the support material, elements of persuasive design have been integrated. Conclusions. outline JUNTS framework web facilitates medical


Background
The diagnosis, or even the suspicion, of a chronic disease makes patients aware of their need to acquire both the knowledge and competences that will ensure they develop the highest possible degree of selfcare and autonomy in the management of their disease (1). Yet, it can be far from straightforward for people with diabetes, for example, to understand why they need to inject themselves with insulin and to learn how and when to do so, or for those affected by rare diseases to follow the steps for administering a speci c treatment. Equally, many patients can nd it extremely challenging to put questions to a specialist about a given medical test, diagnosis or treatment that is unclear to them. In such

Results
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 speci c 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 (speci cally, doctors and psychologists) and combines the use of controlled language with linguistic strategies adapted to the nonexpert to facilitate understanding. COMjuntos was launched in 2018 and application is available in their 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 (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.
Additionally, the results of the linguistic study of the corpus of 50 medical reports allowed us to identify the linguistic indicators that facilitate understanding and the elements that impede it. Of relevance here, are the inclusion and use of specialist medical terminology and the control of syntax and pragmatic elements such as connectors and discourse markers (12).
Medical reports are specialist documents that address a highly diverse audience, with the result that not everyone obtains an adequate understanding of their content. If we focus on their main audienceparents -the results of our comprehension survey show that their level of understanding increased signi cantly -rising from 3.7 to 8.1 out of 10 -when the report was enriched linguistically and cognitively. The enriched version of the report, which succeeded in improving their understanding, is achieved using three types of action: a) correcting grammatical and typographical errors; b) adding descriptions/paraphrases of ambiguous or highly specialized lexical elements; and c) personalizing the text (13). These textual features were also taken into careful consideration when preparing the COMjuntos texts.
Likewise, to "observe how users interact with the prototype", different versions of the rst prototypes were tested, both by the experts (who had, in fact, participated in their design) and by parents and representatives of rare disease associations. Speci cally, 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 speci c general questions (not speci cally about the disease of their kids) about: the rst 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 rst prospective analysis was carried out in which, based on the principles of the Persuasive Systems Design model developed by Oinas-kukkonen (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 speci c 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 simpli ed 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 nd 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 ve communicative acts that invite families to overcome certain situations they might nd 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 [ In turn, the different communicative situations are structured around a series of Challenges as shown in Table 2.

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 rst 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 speci c 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 di culties 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 rst 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 de nitions appropriately worded for the nonspecialist 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 rst 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 di culties can access the information. Another barrier is often the economic one. COMjuntos 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: 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.

Methods
JUNTS framework was develop working closely with doctors and patients.
First, we carried out 10 semi-structured interviews with parents of child's affected by a rare disease during 2018. In those interviews we identify a set of categories related to communicative and linguistic barriers in their relationship with the doctors that has treated their kids. In the interviews we are including questions on clinical information, communication experiences with healthcare professionals, and the impact these had on the interviewees' relationships with them. To analyze these interviews, we used the 'grounded theory' framework and open and axial text coding techniques, in addition to those identifying the properties and dimensions of the categories formulated (15) that help researchers to address the COMjuntos contents.
Secondly, we carried out and video recorded interviews with doctors, psychologists, linguistics, parents with children affected by a rare disease and patient's organization staff. The aim of these interviews was to «ask for solutions» to specialists and the patients associations staff.
The third and last steep was to organize a meeting of the whole research team and patient's association staff of Spanish Federation of Rare Disease and list a set of design trends that could help parents to solve the main communicational and linguistic barriers. We summarize the conclusions extracted from three steps in Table 1 where we offer the main design features of JUNTS. The active participation of patients is essential in the design of any intervention that speci cally targets that group and is especially relevant in the case of those affected by a rare disease (5). In our case, the word patient has a metonymic meaning because the app is addressed to the parents of kids affected by a rare disease. In our framework, we employ four strategies speci cally to harness patient participation as a method for identifying their needs and as an additional means for ensuring their involvement in the project: rst, 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 framework -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.

Principle 2: Persuasive design
Persuasive design in the eld of technological applications has been de ned by Fogg (16) as the scienti c discipline that studies the characteristics and attributes of technologies, particularly those of the so-called technologies, to support a change in user behaviour, that is, persuading them without resorting to either deception or coercion.
Subsequently, various authors, including Oinas-Kukkonen (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 classi es 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 in uence on treatment adherence.

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.

Principle 4: speci c 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.
Principle 5: dissemination via speci c 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, [1] 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 de ned by Sørensen), acquires critical importance. Therefore, we opted to implement the application in multiformats to guarantee the primary necessity of health literacy because the people can actually access the information they need.

Discussion
The JUNTS embodied in COMjuntos has a number of obvious strengths which we have striven to highlight throughout the above presentation and which we summarize below: 1. It is not interactive, which means the patient cannot raise the doubts they have as they consult the application.
2. It has no robust robot that allows exhaustive monitoring of the user's use of the application.
3. It is very generalist and does not address aspects of a speci c rare disease.
4. It is not adapted to blind people and although the videos are subtitled, they are not signed.
5. There is some information that needs to be regularly updated, especially the information regarding data and the fth of the scenarios: ¿Qué más puedo aprender?(What else can I learn?), since there are constantly new associations being set up or new resources being developed.
6. There are some sections with texts that are too long. Perhaps, they need to be shortened to speed up your understanding.
Additionally, we will expose speci c limitations of JUNTS in which is based our app.
The main limitation is that we don't have the opportunity to compare our framework with existing ones.
Unfortunally, there exist a lack in evaluation studies about this kind of tools. Generally, the mobile app development professionals don't have in mind a speci c framework or framework to address the design.
In few word we can't evaluate appropriately COMjuntos until we don't have a framework for assessment including measures such: increase of patient adherences, continuous monitoring of readability and effects in real decisions (e.g. increase the number of parents that ask their doctors after watching COMjuntos videos o read speci c parts).

Conclusions
COMjuntos is the rst application to use the JUNTS, developed from research into clinician-patient communication from both a linguistic and psychological perspective. We are convinced that the same structure and framework can be applied to other diseases or chronic health conditions with similar bene ts. Heras (22) describes how communication between health professionals and patients has been shown to be as important in relieving suffering as the best of painkillers.
COMjuntos has the capacity to transform because, being based on real communicative problems, it provides solutions for the affected population and, moreover, it has a high inclusive potential since it actively and responsibly involves society. As such, it is a good example of knowledge transfer whereby research results are channelled back into society in the form of an application. COMjuntos contributes to changing the level of health literacy in the population and to strengthening the relationship between doctor and patient/family. In this speci c case, it helps to empower families with a rare paediatric disease in their communicative relations with the health professionals with whom they collaborate. Now, two years after the application was launched, we are carrying out a survey with actual users in order to have some evidence of its real adequacy and some data that will allow us to improve it. Both of us revise the manuscript. Our participation has been equitative in all the paper.