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

Abstract

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 find 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.In this paper, we outline how the JUNTS framework has been designed and used to develop the web app COMjuntos based in JUNTS framework. This web app facilitates medical communication and has been specifically designed to help parents who have a child with a rare disease empower themselves in the main communicative situations with health professionals. The JUNTS framework can be adapted to any other type of chronic disease or condition.