How to quote
Pisano González MM, Prieto Rodríguez MA, García Regidor MC, Iglesias Alonso F, Ochoa de Retana García L, López Fernández D, et al. Aportación de las Escuelas de Salud y Programas de Autogestión durante la pandemia COVID-19. Metas Enferm abr 2021; 24(3):3-6. Doi: https://doi.org/10.35667/MetasEnf.2021.24.1003081727
Marta María Pisano González1, Mª Angeles Prieto Rodríguez2, Mª Carmen García Regidor2, Fuencisla Iglesias Alonso2, Lourdes Ochoa de Retana García2, Daniel López Fernández2, Amaya Aguas Torres2, Joan Carles Mach2, Delia Peñacoba Maestre2, Raquel Vázquez Álvarez2, Dolores Currás Mateo2, Mª Lucía Moreno Sancho2, Yolanda Cáceres Teijeiro2, Verónica García Cernuda2, Paloma Amil Buján2, Paula Salamanca Bautista2, Josefina Monteagudo Romero2, Juana Mateos Rodilla2, Carmen Ferrer Arnedo2, Jesús Ángel Sánchez Pérez2, Mª Begoña Belarra Tellechea2, Xavier Gómez i Verdeguer2
1Escuela de Salud de Asturias. Consejería de Salud. Asturias. 2Todos los coautores representan a las Escuelas de Salud y Programas de Paciente Experto/Paciente Activo de las distintas Comunidades Autónomas de España
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Versión en Español
The Network of Health Schools for the Citizens was created in 2012; it was coordinated by the Ministry of Health, Social Policy and Equality, and linked to the Strategy for Addressing Chronic Disease from the National Health System. Its duties are: to encourage the rol by citizens, their joint responsibility, the autonomy of persons with the disease and their caregivers, as well as to increase their ability for decision making (1).
Far from paternalistic models by the health system, the Network has intended to evolve towards a deliberative model, with a greater presence by users, where experience and living with the disease and its care acquire particular relevance and value. Those persons living with the disease and those caring for others will take the leading role of health workers and heirs of the principles of the Ottawa Charter for Health Promotion by the World Health Organization (WHO) (2).
Initially there was talk about empowerment processes, understood as the “social, cultural, psychological or political process through which individuals and social groups can express their needs, concerns, present strategies for their involvement in decision making, and implement actions at political, social and cultural level in order to address said needs” (WHO Glossary, 2011). Currently, involvement processes for patients and caregivers are advocated for, “with the objective of realizing the vision of patients as health “co-providers” and full actors within the health system” (European Patient Foundation –EPF–).
The change in role appears as a key element in the new models of education for health, leaving behind the traditional passive role, and taking a proactive role with a good level of self-care and self-management of the process, and involvement in decision making.
Spain has accepted this challenge, and made the most of the unquestionable value of the individual, collective and community contribution currently made by thousands of patients and caregivers in the country. The Network of Health Schools for Citizens (1) has expanded since its creation, and it is currently formed by the Health / Patient Schools and Active / Expert Patient Programmes from the 17 autonomous regions and the two autonomous cities in Spain; moreover, the General Directorate of the Ministry of Health, the National Institute for Health Management, the Spanish Patients’ Forum (3), the Platform for Patients’ Organizations and the Federation of Rural Women are present in its Institutional Review Board.
With different trajectories and the same objective, the Schools and Programmes within the Network of Health Schools for Citizens have collaborated and implemented specific actions during the COVID-19 pandemic. The members (patients and caregivers) of the network have been aware of the major task they had to undertake during the times of fear and uncertainty imposed by confinement on the lives of Spanish citizens on March, 2020.
One of the first things that the members of different schools have reported is that they have learned to acknowledge that their previous qualification “cushions” the impact of the crisis for them, both regarding the physical and emotional management of their chronic disease and for their relatives and contacts.
Previous training does not only include the control of their specific condition, but also learning about positive thought, coping with adversity, not anticipating fears and negative emotions, relaxing, sleeping well, etc. Training active / expert patients is extremely useful during the COVID-19 pandemic, and the use of virtual communication technologies has been incorporated to their previous training, resulting in the following initiatives (among others):
– Preparation and publication of short videos, with clear and reliable information, with confirmed evidence and contents in three specific areas: COVID-19, emotional management, and healthy habits during the lockdown period.
– Preparation of contents and information regarding COVID-19. Preparation of support materials and implementation of telematic consultations. Follow-up consultations and empowerment through video-calls.
– Actions aimed at information and communication of regulations, measures for prevention and protection in adapted formats (computer graphics) targeted to institutions, city councils, health centres and nursing homes.
– Setting up in-person training sessions on COVID-19 targeted to specific population groups, and extensive online courses.
– Information in social networks (Facebook, Twitter), initiatives such as “Paciente Activo en casa” (Active Patient at Home), “#PacientesCrónicosenCasa” (#ChronicPatientsatHome), “Ventanas Abiertas” (Open Windows). Online training workshops for groups at risk of coronavirus, Active Patient telematic training workshops, computer graphics, video-chats, podcasts, and COVID-19 virtual classrooms for persons in home isolation with information, measures to follow, and testimonials by persons in that situation.
– Creation of “Patient Classrooms” with multiformat contents (guidelines, videos, audios and computer graphics), with specific recommendations to enable protection against the disease and self-care for patients and caregivers.
– Institutional and safe forums where citizens can share their experience in self-care during the pandemic, and interact in safe virtual settings.
Active/expert patients and caregivers started from a situation of higher vulnerability due to their chronic disease, and regardless of this they knew how to leave their comfort zone and become part of something larger, with the mission to help others during the COVID-19 pandemic, with their actions for help and their experience as equals, and based on their individual experiences of continuous improvement and positive approach to life.
As we move forward from the acute stage to the stabilization stage, it will be time to reflect on the ability to recover communities and individuals, and what we can do to ensure that in the future people will be qualified to make decisions regarding their health, their care, and how they want to be cared for.
Maybe during the next months there will be time for a sincere and open discussion about social and health services in the future, their sustainability and the responsibilities of persons, the community and the institutions, in order to shape and sustain this new reality. The emerging crisis regarding health and social care that existed before the COVID-19 will continue existing after the “crisis” is over” (4).
To reinforce the training and information of persons, to increase the efforts targeted to training expert persons; this has not only helped us to face the crisis, but is also one of the priorities that appear as essential.
To continue integrating, making visible, and acknowledging the human capital of the members of the Network of Health Schools for the Citizens, healthcare and society as a whole. To work along the same line and with seamless messages issued by the health centre, the doctor, the nurse, public health authorities and social networks, always based on scientific evidence, will be essential currently and for the future.
- Red de Escuelas de Salud para la Ciudadanía [internet]. Madrid: Ministerio de Sanidad; 2020. [citado 1 jun 2020]. Disponible en: https://redescuelassalud.sanidad.gob.es/conocenos/laRed/home.htm
- Ottawa Charter for Health Promotion. First International Conference on Health promotion [internet]. Ottawa: World Health Organization; 1986. [citado 1 jun 2020]. Disponible en: https://www.who.int/teams/health-promotion/enhanced-wellbeing/first-global-conference
- Declaración de Barcelona. Foro Español de Pacientes; 2010.
- Centre for Empowering Patients and Communities [internet]. Dromahair: European Health Futures Forum; 2018 [citado 1 jun 2020]. Disponible en: http://www.cempac.org/en/the-greatest-emergency-in-living-memory/