Empowering patients to co‐design Covid‐19 responses: the role of online health communities

Abstract

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.