The UOC organizes new training to provide guidance on using clinical practice guidelines and support tools for clinical decision-making on rare diseases. Image: Gustavo Fring (pexels.com)
Joan Antoni Guerrero
The training provides guidance on using clinical practice guidelines and support tools for clinical decision-making on rare diseases, an area in which the UOC is driving research
In April 2021, the eHealth Center (eHC) of the Universitat Oberta de Catalunya (UOC), supported by the Andalusian School of Public Health (EASP), led training for healthcare professionals on the care and treatment of patients with rare diseases who experience specific conditions. Due to the success of that training, it will be run once again in the autumn of 2023, as part of a wider European project.
Marta Aymerich, UOC Vice President for Strategic Planning and Research and President of the Executive Board of the eHealth Center, said that "we have promoted research into rare diseases at the UOC for some years. It has always focused on improving the quality of life of the people who suffer from the diseases, and addressing the challenges they face in accessing social and health care."
This online training is the second part of a European project to develop clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs) for rare diseases.
The project, which is coordinated by the Government of Andalusia's Progreso y Salud Foundation (FPS) and funded by the European Commission's Directorate-General for Health, is aimed at 150 health professionals who are members of the 24 European Reference Networks (ERNs) for rare diseases. Rare diseases are a group of pathologies that affect very few people, have been the focus of very little study, and have limited funds devoted to them.
The CPGs developed as part of the project were implemented through online training led by the UOC, which designed them. This design was in addition to the work that the UOC had done in the wake of Covid to help more than 9,000 teachers adapt to remote teaching.
What are the CPGs and CDSTs on rare diseases?
The CPGs and CDSTs are recommendations for healthcare professionals which provide guidance on care and treatment for patients with specific health conditions arising from rare diseases. The information they contain is based on scientific evidence, and provides useful support in health professionals' practice.
In order to carry out the initiative, the FPS created a consortium of partners, which in addition to the UOC, included the Agency for Health Quality and Assessment of Catalonia (AQuAS), the Andalusian School of Public Health (EASP), the Basque Foundation for Health Innovation and Research (BOIEF), the Aragon Health Sciences Institute (IACS), and the Canary Islands Foundation for Health Research (FIISC).
Reflecting this commitment to quality online education, the eHealth Center and the consortium's other members developed the teaching resources that were used in the learning process for developing guidelines for clinical practice. The training was organized through UOC Corporate. After the success of the 2021 training, work is now under way on the second series for 2023.
Other UOC projects and research on rare diseases
This project is not the only one related to rare diseases undertaken by the UOC. "At the eHealth Center we conduct research to identify barriers to care and to develop strategies for overcoming them, such as co-creating and co-designing decision-making support tools that are based on scientific evidence with the people affected," said Marta Aymerich.
The results of research by the UOC's researchers on the role of parents as caregivers in families with children with rare diseases were published in 2021. The study was published in open access in the International Journal of Environmental Research and Public Health. The research team in the Behavioural Design Lab group (BDLab, formerly known as PSiNET) at the UOC's eHealth Center, consisting of Beni Gómez-Zúñiga and Modesta Pousada (members of the Faculty of Psychology and Education Sciences) and Manuel Armayones (principal investigator of the BDLab group), interviewed parents of children with rare diseases.
Before that research, in 2020, another group of researchers at the UOC created a holistic formal representation of data on rare diseases, including unpublished information on the biological, psychological and social profile of people suffering from some of these diseases. The tool provides a better understanding of the patients, and makes it possible to extract new data about their interaction with the disease.
A mobile application for families of children with rare diseases
In recent years, the UOC has also taken part in projects including Junts (2016-2019), which developed the COMjunts mobile app, which aims to help the families of children with rare diseases communicate with the specialists who treat their children. The participants in this project included the Behavioural Design Lab researcher Manuel Armayones and the Pompeu Fabra University associate professor Rosa Estopà, who in an interview emphasized the usefulness of COMjunts, as it "offers peace of mind to families that have a child with a rare disease".
Aymerich reiterated the importance of all this research and the projects in which the UOC is involved: "We must bear in mind that providing data and knowledge for people with rare diseases is important in making them more involved in shared decision-making about their treatment." She also emphasized that "the knowledge we generate about rare diseases at the eHealth Center can underpin political decisions that affect this population, and is ultimately useful for raising public awareness of the challenges that people living with rare diseases face."
UOC experts
Marta Aymerich
Director of the UOC's eHealth Center
Expert in: Translating research findings into clinical and/or public health practice; evaluating research.
Knowledge area: Public health and research policy.
Manuel Armayones Ruiz
Lecturer in the Psychology and Education Sciences Department
Researcher of the eHealth Center
Expert in: E-health; the Internet and health; e-patients; health in the future; the psychological impact of ICT; patient social networks; addiction; the Internet and new technologies; health and robotics; rare diseases and the Internet; online psychological intervention strategies; rare diseases and ICT.
Knowledge area: eHealth, eSalut, health and ICTs.
Beni Gómez Zúñiga
Lecturer in the Psychology and Education Sciences Department
Expert in: Psychology of health; quality of life and the use of ICT for prevention and health promotion; the historical and epistemological development of psychology as a scientific discipline.
Knowledge area: Basic psychology.
Modesta Pousada Fernández
Lecturer in the Psychology and Education Sciences Department
Programme Director of the Bachelor's Degree in Psychology
Expert in: Personal attention and memory processes and the impact of ICT use on them; psychology of health and the use of ICT to promote and care for it.
Knowledge area: Basic psychology.