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In Valencia we are living a status in which there is a list of initiatives in favour of healthy ageing. Most of them have been integrated under the umbrella of our reference site, which has received the top qualification (4 star) in the last assessment, in 2019 (https://ec.europa.eu/eip/ageing/library/2019-call-reference-sites-results_en). There is, however, a certain disconnection between the main actors. The own reference site tried to limit so, and the formation of the ECHAlliance Ecosystem, VLCHealth (https://echalliance.com/ecosystem/valencia-health-ecosystem/), was also conceived as an effort to align resources and initiatives. The case of VIGOUR responds in Valencia to that urgent need.
The very beginning was one good practice, CARMEN (Chronic Ailment Reduction after MENopause), registered in the commitment tracker of EIPonAHA (https://ec.europa.eu/eip/ageing/commitments-tracker/a3/lifestyle-improve-frailty-mood-cognitive-decline-and-quality-life-women_en). This is an example of vertical integration in which midlife women, and also older post-menopausal women, have been joining an initiative of promotion of healthy lifestyle, mainly focused on the practice of physical activity in the facilities of the primary care centres. Midwives ran the physical activity sessions. AMPARO RODRÍGUEZ, as Midwife at Primary Health Centre, points out:
En las sesiones trabajábamos con palos, pelotas pequeñas, balones, pelotas de pilates, ejercicios de orientación a nivel cognitivo para acabar con unos minutos de relajación.
Las mujeres estaban en este programa durante unos tres meses y luego pasaban a acudir ellas solas al centro, también dos veces a la semana, con una hora de duración, y eran tutorizadas por una persona que salía de estos grupos y que dirigían a sus compañeras.
These one-hour sessions, twice a week, were first supervised and led by the primary care midwife. Later, in order to assure scalability, these women organised themselves to continue without limit after a three-month cycle. For that, they used the centre facilities at hours different to those used by the midwife, who at that stage, was working with a new group.
The programme had been regularly run in two primary care centres of the metropolitan area in Valencia, (Foios and Massamagrell) and was being maintained with the participation of around 200 women. This number was growing slowly, because of the expected losses in this sort of programmes due to insufficient adherence, something that was balanced, and positively growing, by the regular enrolment of new participants.
Midlife for women is a critical stage for adopting healthy behaviours and preventive strategies in order to have better quality of life. In that regard, Midwife Amparo Rodriguez claims:
A lo largo de estos años sí que hemos visto que antes de venir a los ejercicios venían enlentecidas, con pocos reflejos, debido a la edad, viudas, solas y no tenían ningún tipo de contacto a nivel social. Nos dimos cuenta de que entablaban relación entre ellas y quedaban para andar, que era bastante positivo para ellas. También ellas cuando salían del programa se les volvía a repasar con otra serie de actividades que realizaban aparte y nosotros nos dimos cuenta de que estaban más ágiles y de que tenían mayor estabilidad, es decir, mayor movilidad, mayor reacción a las cosas cuando se les preguntaba, con lo cual creo que es muy conveniente seguir manteniendo este u otro programa similar bienestar de estas mujeres tanto a nivel físico, psicológico y social.
The socializing approach of the project was a key element, as it was the use of Information and Communication Technologies.
To maintain adherence, the use of ICT technology was encouraged, and women were instructed on the networking opportunities provided by smart telephones. For that, a module of several sessions to educate in the use of Internet was freely offered in the informatics rooms of the University (School of Medicine and the Faculty of Psychology), and also directly face-to-face sessions given by one NGO, Cibervoluntarios (https://www.cibervoluntarios.org/es/blog/ver/mujeres-SalusVitae-Valencia).[1]
Another NGO, Asociación Salus Vitae (http://salusvitae.es/), which was supported by funds from a previous European project, provided support. Although not recently updated, the pictures in the website come from women and sessions in the CARMEN programme.
In this way, the initiative warranted scalability, empowerment of the end-users, cost-effectiveness, and gender, because this is something addressed to cover the specific needs of women at that life period (menopause, susceptibility to diseases like osteoporosis, metabolic derangements, anxiety and other psychological issues, etc.).
Finally, this programme was connected with the Clínico-Malvarrosa University Hospital, who takes care of the regular health controls of those women in the Department of Obstetrics and Gynaecology.
The programme has been also recognised by our regional health authorities, which have distinguished the initiative as a regional good practice.
The COVID-19 pandemic has created massive disruptions to integrated care across the world. Dr JUAN JOSÉ HIDALGO, Specialist in Gynaecology and Obstetrics at Clínico-Malvarrosa University Hospital, considers that:
La pandemia por COVID-19 ha supuesto un perjuicio en la integración asistencial por dos motivos fundamentalmente. Por una parte, debido a la necesidad de redirigir gran parte de los recursos humanos y materiales disponibles en el sistema de salud a la atención de los pacientes afectados por esta patología, así como a las medidas y actividades encaminadas a la prevención de la enfermedad. Por otra parte, esta redirección de los recursos, así como las medidas implementadas con el objetivo de evitar que el sistema de salud supusiera una vía de expansión de la enfermedad, ha supuesto un detrimento tanto en la calidad como en la cantidad de la atención a los pacientes afectos de otras patologías, con el consiguiente aumento en la demora en la asistencia a estos pacientes tanto desde el punto de vista diagnóstico como terapéutico.
The COVID-19 pandemic has worsened communication with patients. For a long period of time, face-to-face care had to be suspended with patients affected by presumably delayed pathologies, with the consequent deterioration in the main communication route usually used in health care in Spain. So, Dr Hidalgo explains that:
Se han tenido que implementar de forma “abrupta” sistemas de comunicación alternativos no presenciales (teléfono, videoconferencia, correo electrónico…) para los que en muchos casos no contábamos con los medios ni la formación adecuada.
In this situation, according to Dr ANA MARTÍNEZ ASPAS, also a gynaecologist at Clínico-Malvarrosa University Hospital:
Se ha limitado el acceso a los pacientes, reduciendo drásticamente quirófanos, consultas, técnicas… demorando visitas y haciendo que muchas hayan pasado a ser telefónicas, con lo que se pierde también mucha información y dilatan los tiempos en diagnósticos y tratamientos, sumado a que en muchos casos los pacientes por miedo han demorado el consultar.
Doctors are fully aware of the challenges that COVID-19 has posed. For this reason, they consider that, although the enhancement of digitization to achieve a type of non-face-to-face alternative care for patients may entail a diversification and an improvement in comprehensive care for them, the general balance of the pandemic entails certain difficulties. In this regard, Dr Hidalgo also points out that:
Un contexto asistencial y social con COVID-19 supone una mayor dificultad para implementar un proyecto de atención integral dado que conlleva limitaciones y restricciones en una de las vertientes de atención a pacientes, tanto desde el punto de vista clínico como de investigación, como es la presencial, sin cortapisas para realizar seguimientos más o menos exhaustivos y todas aquellas pruebas y terapias que resulten pertinentes.
The CARMEN programme has planned the extension to vulnerable groups, like for example that of cancer survivors (https://ec.europa.eu/eip/ageing/commitments-tracker/a3/lifestyle-improve-frailty-mood-cognitive-decline-and-quality-life-women_en). This has been initiated already a few years ago, but has suffered a faster progression since its presentation in the commitment tracker of EIPAHA.
Among the initiatives integrated in the Valencia reference site, a primary care centre in town has been promoting a programme similar to CARMEN. This time both men and women were offered the practice of different options of physical activity, which this time was complemented with leisure activities, including “cultural walks”, etc. The primary care centre, named República Argentina, has included i) the own core of the programme, represented by the integration of care between nurses and family doctors, within the health profile, ii) the end users, through the development of the figure of the “Expert Patient”, who helps by taking charge of other users, and iii) the participation of the Red Cross, as a NGO, which received funding from the municipality for their programme of fight against the unwanted loneliness in the elderly people.
Another programme under development is ACTIVA, progressing through the enrolment in integrated care by family doctors, nurses, physiotherapists, and also expert patients. The prescription of physical activity for regular users of the primary care has been introduced in the electronic chart as an option similar to drugs. ACTIVA has been developed in the particular health department of the University General Hospital, distinct to the two previous initiatives, CARMEN and República Argentina, which are integrated in the health Department of the Clínico-Malvarrosa University Hospital.
VIGOUR has provided the opportunity to materialise a scaling-up plan, which should be accomplished by the permeation between those three live programmes. A strategy has been prepared in which the key point, following the experience of the ACTIVA programme, has been the extension of the figure of the “Expert Patient”.
There is the explicit purpose of sharing, and extending, that figure in order to scale up in a cost-effective way the benefits of healthy lifestyle through integrated care.
Although the current situation has left a lot of fear, distrust and a lot of muscle loss among older people, participation in experiences related to health promotion seems to be starting again in Valencia. This is what is happening in some primary care centres (EAP CS), like Chile, Salvador Pau, República Argentina and Serreria 1, all of them included in Clinico-Malvarrosa Health Department.
There they have already set up very interesting groups and are waiting to create neighbourhood and solidarity networks.
Dr CAROLINA MIR, General Practitioner de EAP CS Serreria 1 Clínico-Malvarrosa University Hospital, considers that reactivating what was already implemented is right now, in the current circumstances, a great step, because to overcome the fear of the people who have stayed at home during the last year or to recover the social interaction that has been slowed down, to reactivate all this is already a great step.
Para mí el reto sería que todos los centros pudieran prescribir actividad física o algún tipo de envejecimiento activo, ya sea en forma de actividad física o bien en forma de recursos sociales, de abordaje de la soledad en plan de interacciones sociales, de club de lectura, etc. etc., de todo lo que fomente volver a socializar, integrar al anciano en su barrio, que ahora se ha quedado en su casa.
She knows well the ACTIVA project and knows what the impact of COVID-19 has been on older people:
Las actividades de actividad física para personas mayores, esto con la pandemia, se paró en seco. Primero, porque desde la Conselleria ya se puso entre las normas a seguir que se suspendía todo tipo de actividad comunitaria, con lo cual estaba prohibido hacer cualquier tipo de reunión o actividad que implicara la reunión de personas, aparte de todas las normas de siempre. Entonces esto lo que supuso fue un parón radical de todo lo que era la actividad física en el proyecto ACTIVA.
Although currently that area is returning to normal, everything still seems quite challenging:
Están volviendo a iniciarse los paseos, pero siempre al aire libre y con muchas menos personas de las habituales por el miedo, porque al fin y al cabo es una actividad que está dirigida a personas de la tercera edad, y los mayores han sido la población más vulnerable de cara a la COVID y la que más, de alguna manera, ha producido una fobia mayor a la hora de volver a retomar la normalidad. Los centros de mayores están cerrados, era un punto donde se realizaban las actividades físicas, por lo cual no han podido volver ahí y los centros de salud que tenían locales para la realización de actividad física, en la zona del General, de momento no lo consideran como una prioridad el retomar las actividades comunitarias y no se está llevando a cabo. Quitando de las salidas en forma de paseo que se realizaban en los diferentes centros de salud, son muy pocas, todo lo demás la COVID lo ha arrasado. A todo esto, la red de profesionales que estaban implicados con los programas de comunitaria, con la barrera de las normas de la Conselleria de no hacer actividad comunitaria, pues ahora mismo les está costando mucho retomar la iniciativa propia de volver generar esta actividad.
On the other hand, Dr Carolina Mir is now working in Serreria 1 Health Centre. Aware of the circumstances, she claims:
Nos vamos a encontrar ancianos mucho más inmovilizados, con mucha menos energía para activarse, con peor estado anímico y cognitivo por el aislamiento, pero con muchas ganas de volver a activar todo esto y que esto se recupere.
Thinking on the positive side, focusing on healthy ageing, she believes that we will be able to talk about the post-COVID era from October onwards:
Una vez ya ha pasado todo y ahora que empieza la vacunación de todo el mundo y ya las actividades por parte de la Conselleria empiezan a permitirse, siguen cerrados los centros de mayores, sigue difícil la posibilidad de reunir a las personas mayores por el miedo, pero sí que es verdad que ya se empiezan a fomentar las actividades comunitarias y detrás de esto todo lo que implica el envejecimiento activo, entonces ya están volviendo los grupos de actividad física en algunos Consejos de Salud, en forma de paseo, de macha nórdica, de gimnasia en algún parque, etc., etc., y ya están volviendo a surgir iniciativas en muchos centros de salud de este tipo. Pero ya casi mirando hacia septiembre u octubre, que es cuando yo pienso que el índice de vacunación será más alto, la población estará ya más integrada en la normalidad, ya sin tanto miedo.
Much of this experience arises around the figure of the previously mentioned “Expert Patient”. This idea of “Expert Patient” belongs to a program that Public Health in Spain purchased from Stanford University in the United States. It does not arise, therefore, in primary care centres, but rather in the Basic Zone Health Councils [CSZB].[2] It is already included in the Health Law where patient-citizens, neighbourhood/cultural associations, etc., have the possibility to empower themselves in something as important as their health and public health.
The health authority within the regional government catalogued this “Expert Patient” as an “Active Patient” within a program with the purpose of offering support to people with a chronic disease, what is to say transmitting knowledge and abilities related to the specific care of the disease to increase the self-care, so that they acquire better self-care of their health.
People with chronic diseases are likely to visit a healthcare professional several times a year to monitor their illness. However, they are forced to make decisions about their own care on a daily basis. The education of patients for self-care becomes a fundamental tool in this context of chronic diseases. Being an “Active Patient” means being trained to understand and manage their disease, thus complementing the work of healthcare professionals.
Speaking with ROSA MARTÍNEZ, an active patient in Clínico-Malvarrosa Health Department, we asked her what kind of characteristics an “Expert Patient” should have and she tells us:
La única habilidad es la práctica, el ejemplo tiene que ser empezar por uno mismo, es muy sencillo explicar con el ejemplo, acompañar a concienciar. Sería estupendo que los participantes de un CSZB tuvieran una conciencia de lo público.
We also asked her, from her position, what had been the impact of the pandemic for patients and for the Health Council. She answered:
Nuestros proyectos básicos quedaron congelados como el mismo dinamismo de la sociedad. Paralizamos:
Fortunately, new plans for the future are added to this situation. Once the summer is over, new projects will be launched in September as
gimnasia con bastones (personas con movilidad reducida), paseos con bastones, marcha nórdica, control del sobrepeso, clubs de lectura, un trabajo concreto para detectar la soledad no deseada.
Sometimes it has been questioned whether health personnel receive the figure of the expert patient suspiciously. Dr REMEI RAGA, General Practitioner in República Argentina Health Centre, considers:
Muy al contrario, cuanto más cultura sanitaria tenga el paciente mejor se trabaja para el objetivo común. No puede interferir ni recelar, ahorra esfuerzos si ya hay una base de cuidados mínimos, sobre todo en pacientes crónicos a los que va dirigido.
There is awareness in that some more stakeholders need to be incorporated. The ACTIVA programme has approved the link with some private fitness centres, but given the public nature of the health centres, this is only as information to the users.
Despite the existence of the ECHAlliance VLCHealth ecosystem and the reference site, the profile of the companies, still too few, does not fit with the features of the programmes.
There is more success in terms of NGOs, which have shown receptivity and commitment, as described above.
Social services still have an insufficient, if any, representation. This is most possible linked with the traditional disconnection between the health and the social services worlds in our country. We are aware of that, and possibly this is why the profile of end-users in or programmes is not that in need of their support, with the only exception of the Red Cross programme that, it should be said, is slightly separated from the core of the lifestyle promotion main objective.
Finally, health authorities, represented by the public health service of our regional government, have been contacted and the purpose of their growing involvement has been declared. Much needs to be done, anyway, in that regard, because they themselves have designed own programmes that consume all their resources. The initial contacts have been reassuring, but the current status of the COVID-19 pandemic has interrupted any further progression.
The COVID-19 pandemic has shed a spotlight on the resilience of healthcare systems, and their ability to cope efficiently and effectively with unexpected crises. The pandemic has highlighted the potentially enormous option value of research infrastructure in the field.
In this regard we talk with ANA FERRER-ALBERO, Head of International Programs Unit (UPI) at INCLIVA Health Research Institute. Her professional work is focused on the senior management of European funds from the European Commission to carry out international research projects. At INCLIVA she coordinates the International Projects Unit since 2013.
The mission of the UPI is to promote the internationalization of health research in the different areas of the Hospital Clínico Universitario in Valencia, its health department as well as various research groups of the Faculty of Medicine of the University of Valencia and the IGENOMIX Foundation. To this end, UPI INCLIVA supports research staff in participating in European and international R & D & I funding programs and comprehensively manages the projects achieved. In that regard, Ana Ferrer considered:
La COVID-19 ha supuesto un reto para la UPI, ya que ha sido complicado hacer frente a la nueva situación abierta por la pandemia, desde la administración y desde la gestión de los proyectos. Pero de los retos, cuando se trabaja duro, se sacan resultados positivos. La conclusión es que se han conseguido muy buenos resultados a pesar de las circunstancias.
In the field of scientific management, it has been very complicated because working and collaborating with other countries –consortia– has meant following different rhythms depending on the different European countries. The main objective has been to join forces. To which must be added that, since March 2020, the staff has carried out their functions in the telework mode.
In addition, there are projects that have been paralyzed, with the added problem of the situation in which researchers in charge of projects were left.
However, in other cases, it has been possible to delay datelines for result presentation; and new projects have also been presented to the European Commission:
Finalmente han salido 20 convocatorias nuevas a lo largo de 2020 y, en lo que respecta a la financiación, se ha conseguido un millón de euros más para los diferentes proyectos, lo que demuestra la importancia que en situaciones como la actual sigue teniendo la investigación.
Another key issue that has been worked on is support for researchers: different courses have been carried out to train researchers, for example Resources available for research staff. The UPI, with the collaboration of the European Projects Office of the Carlos III Health Institute, organized at the end of 2020, a conference aimed at INCLIVA research staff with the aim of guiding them in the strategic steps to follow in the new research program and innovation of the European Union, ‘Horizon Europe’. Ana Ferrer led the conference, under the title “H2020 Results and the paradigm shift towards Horizon Europe 2021-2027”.
This contrasts with the opinion of doctors in the clinical field, who consider –as Dr Hidalgo points out– that:
Al igual que la práctica asistencial, los proyectos de investigación se han visto afectados por la pandemia de COVID-19 debido a haber tenido que cancelar o minimizar los contactos presenciales de las pacientes incluidas en ellos, lo que ha supuesto que hayan tenido que suspenderse muchos de ellos o modificar sus protocolos de investigación. Esto puede implicar que el reclutamiento de pacientes en los proyectos haya sufrido una merma o que el desarrollo de ellos haya o vaya a observar alteraciones que podrían afectar a los objetivos previstos inicialmente o a la validez de sus conclusiones.
Within the pilot, since COVID-19 had paralyzed everything as we have already mentioned, new ways to carry out scalability have had to be found. In this regard, a key line of action has been telemedicine, taking advantage of telephone consultations as a means to know the satisfaction degree shown by patients in the gynaecology area of the Hospital Clínico. Thus, through a planned survey, we have been able to find out how patients have lived through this difficult period thanks to ICT.
ALICIA GARCÍA, Nurse Practitioner at INCLIVA and at Clínico-Malvarrosa University Hospital, claims that:
Se ha perdido mucha cercanía y contacto con las pacientes. En estas circunstancias, es más difícil que te entiendan y las consultas se hacen mucho más largas. En general, se ha observado, por una parte, que las pacientes más jóvenes, hasta 45-50 años, no parecen tener ningún problema en tener consultas telefónicas para recibir información sobre alguna cuestión concreta y los resultados de alguna prueba que se les haya mandado. Además, consideran como una mejora del servicio el hecho de ponerse en contacto con el doctor por medio de videoconferencia o similares. Piensan que esto mejoraría la comunicación con el personal sanitario, ya que favorecería mucho la comunicación y el entendimiento porque están viendo a la persona.
Por otra parte, las pacientes más mayores, se muestran más reacias. Enseguida te dicen: “no, no, yo necesito ver al doctor”.