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, patientcentred 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.

Experienced based co design: nursing preceptorship educational programme

“…This study confirms that touchpoints are key to unlocking everyday experiences [ 72 ] and sparked a highly collaborative process amongst the co-design team when shared [ 21 , 22 ]. Per the present results, previous studies have demonstrated that collectively reflecting on each group's touchpoints provides a real opportunity to see a situation from different perspectives and better understand practices [ 19 , 73 ]. This project's approach to embedding the touchpoint narratives throughout the new educational programme signifies an innovative approach to utilising touchpoint narratives beyond the initial design phase of an EBCD intervention and creating an authentic educational programme.…”

Diagnosis Disclosure and Peer-to-Peer Information Seeking Among COVID-19–Infected Social Media Users: Survey of US-Based Adults

“…Previous research suggests that participation in online health communities can help those affected by chronic health conditions gain valuable medical information and experience lower levels of perceived social exclusion and improved psychological well-being [ 11 , 15 , 21 , 22 ]. In the current survey results, we find evidence that patients with acute illnesses like COVID-19 can accrue many of the same benefits by participating in peer-to-peer interactions on social media.…”

Co-designing Diabetes Care With Patients

“…Representing diverse stakeholders, including patients and caregivers, improves the insightfulness, effectiveness, generalizability, and validity of outcomes. 6,14 It is important to assemble teams with diverse user characteristics, including cultural factors, social barriers, age, and socioeconomic status. Education should be provided to teams about the importance of representing unique perspectives to facilitate a better understanding of the needs of diverse users.…”

“…Co-design has been shown to drive innovation and improve healthcare delivery. 6 Device design and development has been moving toward including patients and caregivers. For example, IDEO CoLab is an innovation engine where patients, caregivers, and healthcare providers, designers, academics, professionals, and communities explore systemic challenges, design, and prototype novel interventions, tools, and services.…”

“…These can be addressed with an organizational commitment to collaboration, health literacy support, and adapting health tools. 6 Purpose-built creative spaces facilitate team collaboration and various group sizes. Effective project space makes it easy for each stakeholder, including patients and caregivers to share insights, collaborate, and exercise creativity.…”