In the midst of the second wave of the pandemic, there were increasing reports of people who contracted COVID-19 and continued to struggle with COVID-19 symptoms months after infection and did not recover from the infection for a long time. The issue – called Long COVID by the early affected on social media – would be discussed at a board meeting of LUNGE ZÜRICH. It quickly became clear to everyone that the long-term effects of Covid could become a long-term problem, both for those affected and for society.
LUNGE ZÜRICH acts quickly and decisively
The managers at LUNGE ZÜRICH decided to tackle the issue of Long COVID and to release the necessary financial resources. They also commissioned the APS agency to develop and implement a plan. In this way, LUNGE ZÜRICH began the foundations for the Altea network.
“When it comes to Long COVID, the goal is for those affected to recover from their symptoms as quickly and completely as possible.”
An idea gets wings
The initial idea was to adapt the existing, well-evaluated “Living better with COPD” program for Long COVID patients. Consequently, Kaba Dalla Lana was asked to adapt the program. In turn, they involved the APS agency, which has extensive project experience in the public health sector.
However, it soon became clear that an adjustment of the “Living better with COPD” program would not work. The content of the program was not well-suited, as it focused on the long-term management of a chronic illness. However, the aim with Long COVID is for those affected to recover from their symptoms as quickly and completely as possible. The team therefore said goodbye to the planned adaptation and launched the idea of a network for interdisciplinary exchange on the Long COVID syndrome.
Altea unites all relevant solution providers
By now, Long COVID patients have a knowledge advantage over scientists, doctors and therapists thanks to their experience with treatments. Back then, the science was still in its infancy and was only gradually able to grasp the full extent of Long COVID. At the same time, doctors and therapists were gaining their initial experience in treating Long COVID symptoms.
For the Altea team, it is therefore clear that those affected have a decisive role to play in defining Long COVID, as they not only know a great deal about the symptoms and therapies, but are also able to provide other affected individuals and specialists with decisive input on research, diagnosis and treatment.
Everybody’s talking? So much the better!
This is the basis for the concept of co-creation. This means that patients, scientists, specialists and service providers exchange treatment approaches, research questions and experiences on the Altea platform. Each group benefits from the knowledge of the others and together they develop the platform further.
The team implemented the concept, initial content and all the programming in record time, and after just under four months, on April 16, 2021, the Long COVID platform Altea went online. Back then, as is now still the case, one of the biggest challenges was analyzing the current state of knowledge, as there is still no uniform definition of Long COVID or a confirmed diagnosis. There is also a lack of evidence regarding therapies. That’s why Altea has set itself the goal of collecting findings from trustworthy sources, analyzing them in editorial form and making them generally accessible – comprehensible, neutral and free of charge.
“Co-creation means that patients and specialists have a say in the content and share treatment approaches, research questions, experiences and tips.”
Who’s behind it?
The parties involved are LUNGE ZÜRICH, as the initiator and primary sponsor of Altea, and APS AG, an agency for business development and communication. APS has also been in close contact with the Institute of Epidemiology, Biostatistics and Prevention at the University of Zurich (EBPI) for some time now. The agency is currently responsible for the project management and communication of the Swiss School of Public Health's research program Corona Immunitas. The plan is to turn Altea into an independent sponsoring body with broad support from various organizations in the future.
“Altea’s approach has a future: major challenges in the healthcare sector can only be solved by working together.”
Long COVID emerged as a result of Corona Immunitas.
As part of the 40 individual studies conducted by Corona Immunitas, the EBPI conducted a study in people from the canton of Zurich who tested positive for SARS-CoV-2 in spring 2020. As with all Corona Immunitas studies, this study involved carrying out several antibody tests and completing weekly and monthly questionnaires. The questionnaires soon showed that some of the test subjects suffered from the consequences of the infection for longer than expected. Internationally, researchers came to similar findings, and the topic of Long COVID was increasingly covered by the media. It was time for LUNGE ZÜRICH and its partners to act.
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