COMjunts, the app from the UPF and the UOC for families with children suffering from rare diseases, chosen as best app for patients at the eHealth Awards 2018

COMjunts, the app created by Pompeu Fabra University (UPF) and the Universitat Oberta de Catalunya (UOC) that aids communication between families with children suffering from rare diseases and healthcare professionals, has been recognized as the best app for patients at the eHealth Awards 2018. The app emerged from the Junts project, devoted to overcoming socio-educational barriers and promoting literacy about the interferences and difficulties in understanding information and documents aimed at families of children affected by rare diseases.

The leaders of the Junts project, Rosa Estopà, professor in the Translation and Language Science Department at the UPF, and Manuel Armayones, professor in the Faculty of Psychology and Education Sciences and Development Director at the eHealth Center of the UOC, received the award at the eHealth Congress, held on 28 October, in Madrid.

Armayones highlighted the collaboration of the Spanish Federation of Rare Diseases (FEDER) in the creation and dissemination of COMjunts and explained that the eHealth Center “always seeks patients' active participation in designing solutions that meet their real needs”. The UOC professor expressed his gratitude for the award and explained that this recognition, along with the positive reception that the app is receiving among families, reinforces “the role that universities should have of positively impacting society”.

For her part, Rosa Estopà thanked the project’s entire team for their work, funded by RecerCaixa, and highlighted the importance this type of award represents for empowering patients. “We want to ensure that language is never an obstacle, but rather quite the opposite; a tool that fosters empathetic communication between health professionals and patients”, she explained.

An app designed with and for families

COMjunts emerged to improve communication between healthcare professionals, associations, patients and families and to empower the latter in speaking out about their children’s disease. It provides scientific solutions for specific communication problems aimed at both specialists and the people affected.

The app was released last September and is available in a web version and for Android and iOS devices; it proposes seven different communication challenges that families may face. For example, the day that they are told that their child has a rare disease, when they attend a medical appointment, when they receive a medical report or when they have to undergo a medical test. Each challenge is illustrated with a video showing direct accounts from affected families and healthcare professionals. It also features hypertext that explains how each communication situation is managed, adapting it to the cognitive needs of the families, as well as a dictionary aimed at the patient, explaining the more complex terms and providing complementary information with advice, resources and interesting links.

The app was developed in collaboration with linguists from the IULATERM research group at the UPF's Institute of Applied Linguistics; psychologists from the UOC's PSiNET (Psychology, Health and the Net) research group, and researchers and doctors from the Rare Diseases Unit and the Clinical and Molecular Genetics Area at Vall d’Hebron Hospital. Guidance was also received from FEDER and patients’ families.

The eHealth Awards were presented at the close of the 3rd eHealth Congress, organized by the Association of Researchers in eHealth, AIES, and the communication agency, COM Salut. As well as the category for best app for patients, awards were also presented for best app for healthcare professionals, best gamification in health, best 3D printing initiative, best big data / artificial intelligence initiative, best robotics initiative, best telemedicine initiative, best teleconsultation initiative, best electronic medical records initiative and best digital hospital. Alongside the competition, the #SaludSinBulos award and other special awards were also presented: best digital health initiative, digital patient and digital health influencer of the year.