Patient Representatives’ Perspectives on Healthcare at the Time of COVID-19 and Suggestions for Care Redesign After the Pandemic: A Qualitative Study in Twenty-Four Countries

Abstract

Tanja A Stamm,1,2 Yuki Seidler,1 Margaret R Andrews,1 Mohammad Eghbali,3 Juliet Kiguli,4 Valentin Ritschl,1 Maisa Omara,1,2 Gertraud Schaffer,5 Erika Mosor1 1Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Vienna, Austria; 2Ludwig Boltzmann Institute for Arthritis and Rehabilitation, Vienna, Austria; 3School of Nursing and Midwifery, Torbat Heydariyeh University of Medical Sciences, Torbat Heydariyeh, Iran; 4Department Community Health & Behavioural Sciences, Makerere University School of Public Health, College of Health Sciences, New Mulago Hospital Complex, Kampala, Uganda; 5Österreichische Rheumaliga (ÖRL), Maria Alm, AustriaCorrespondence: Tanja A Stamm, Section for Outcomes Research, Center for Medical Statistics, Informatics and Intelligent Systems, Medical University of Vienna, Spitalgasse 23, Vienna, 1090, Austria, Email [email protected]: Several comments and recommendations called to embed better the patients’ and public voice in healthcare policymaking. Still, no studies captured patients’ bottom-up perspectives regarding healthcare at the time of COVID-19 at a micro-level in a range of different countries. We, therefore, explored the perspectives of patient representatives in all six World Health Organisation (WHO) regions and extracted suggestions for care redesign after the pandemic.Methods: We conducted semi-structured interviews with patient representatives until saturation. Thematic analysis followed a modified form of meaning condensation. We established rigour by transcript checking, inter-coder agreement, quote variation and standardised reporting.Results: Disadvantaged people experienced an unprecedented inequity in healthcare from limited access to physical violence. The narratives revealed the extent of this inequity, but also opportunities for health workers to act and improve. Stigmatisation from COVID-19 differed between cultures and countries and ranged from none to feeling “ashamed” and “totally bashed”. While experienced as indispensable in the future, patients refused telehealth when they were given “bad news”, such as having an eye removed because of melanoma, and in end-of-life care. Patient representatives redefined their role and became indispensable influencers throughout the pandemic and beyond.Conclusion: We reached out to patient representatives with diverse perspectives, including those who represent minorities and marginalised patient populations. Since preferences and personal meanings drive behaviour and could be foundations for targeted interventions, they must be considered in all groups of people to increase society’s resilience as a whole. Future healthcare should tackle inequity, address stigmatisation and consider patients’ narratives to optimize telemedicine.Keywords: coronavirus, COVID-19, SARS CoV-2, patient perspectives, equity, co-creation

Keywords

• coronavirus
• covid-19
• sars cov-2
• patient perspectives
• equity
• co-creation