E4: Learning from patients on how to manage covid-19

Wednesday 22 June 2022 | 13:15-14:30

Format: Presentation
Stream: Person and family-centered care
Content filters: Responses to the covid-19 pandemic, Co-presented with patients, service users or carers

(Part A) Why the patients learn faster: an agile approach to long covid

All over the world, patients have constituted the wave front of learning about covid-19, and have sounded the alarm when basic assumptions about covid-19 have turned out to be wrong. Here, we will provide examples of when patient organizations have been involved in identifying novel and critical steps toward correct treatment and monitoring of the disease, and when authorities/public health systems have proven inadequately tuned to address the issues that arise from the pandemic.

An agile approach requires tightly coupled feedback loops between producers and consumers. We will present benefits of tightening this connection between healthcare systems and patients.

Lisa Norén, Läkare till Läkare/Doctor to doctor; Sweden

Tove Lundberg, The Swedish Covid Patient Organization; Sweden

(Part B) Post-covid protocols for patient’s self-assessment and quality assured diagnosis in primary care

Two post-covid protocols are implemented and accessible nationwide in Sweden. The patient’s self-assessment protocol is available at 1177 Vårdguiden, a national website with public information about health and diseases and where to find suitable care. The quality assured diagnosis protocol for primary care is published at the National knowledge management website Kunskapsstyrningvard.se. We will share lessons learned and measures taken in connection with implementation and practical use of the protocols, as well as how they were initiated and designed by a national multi-professional task force. The members of the task force were patient participants and specialists in competences related to covid-19.

Katharina Stibrant Sunnerhagen, Institute of Neuroscience and Physiology, The Sahlgrenska Academy; Sweden

(Part C) Learning from patients how to manage a pandemic: covid-19 in Switzerland

The covid-19 pandemic is much more than a medical issue.

How did it impact our lives? How did our societies respond? Have these responses been appropriate and effective?

We asked the experts: people who experienced it first hand, confronting the difficult road from uncertainty to diagnosis, from treatment to remission.

Where did we struggle? And where did we learn, as individuals and societies? This is action-oriented research: a participatory process, combining practical knowledge and theoretical reflection, in the pursuit of solutions to issues of pressing concern to individuals and communities.

Giovanni Spitale, Institute of Biomedical Ethics and History of Medicine, University of Zurich; Switzerland