Empowering patients to co-design Covid-19 responses: The role of online health communities

Covid-19 has paved the way for major disruptions to conventional healthcare systems accelerating participatory health enabled by interactive virtual environments. The role of the ‘patient voice’ as a fundamental resource in an effective Covid-19 response has moved centre stage. In this time of extraordinary crisis and health system disruptions, patient-centred models offer opportunities for embedding shared decision-making to improve health outcomes using digital tools. Through an exploratory case study, this paper examines patient action during Covid-19 and how co-design methods can be adapted to an online environment in response to Covid-19 restrictions to improve the Covid-19 patient and family experience of care. Experienced-based co-design was employed to map the care journey of patients with Covid-19 confined at home in Spain - one of the hardest-hit countries in the pandemic, to identify quality improvements. Main touchpoint needs were explored in online co-design workshops leading to improvement projects including the development of a Covid-19 patient online health community (OHC) to deliver patient-centred care during the outbreak. The Covid-19 patient OHC has become an instrument that facilitates Covid-19 patient’s recovery, especially psychological resilience. OHC participation has clear potential for empowerment and transformative agency as it enables Covid-19 patients to control the content and flow of the information available to them. This paper offers valuable insights on how co-design can be adapted to an online format to enable more meaningful patient input to healthcare design when faced with uncertainty and ambiguity during health crises.