The sepsis journey and where digital alerts can help: a qualitative interview study with survivors and family members in England Authors

Runa Lazzarino ^1,2* Aleksandra J Borek ^2,3 Andrew J Brent ⁴ John Welch ^5,6 Kate Honeyford ^7,8 Ron Daniels ⁹ Anne Kinderlerer ¹⁰ Graham Cooke ¹⁰ Shashank Patil ¹¹ Anthony Gordon ¹⁰ Philippa Goodman ¹² Ben Glampson ¹⁰ Peter Ghazal ¹³ Ceire Costelloe ^14,7 Sarah Tonkin-Crine ^2,3

• ¹ University of Oxford, Oxford, United Kingdom
• ² Nuffield Department of Primary Health Care Health Sciences, Medical Sciences Division, University of Oxford, Oxford, England, United Kingdom
• ³ NIHR Health Protection Research Unit in Healthcare Associated Infections and Antimicrobial Resistance, Imperial College London, London, England, United Kingdom
• ⁴ Oxford University Hospitals NHS Trust, Oxford, England, United Kingdom
• ⁵ University College London Hospitals NHS Foundation Trust, London, United Kingdom
• ⁶ NIHR Central London Patient Safety Research Collaboration, London, United Kingdom, London, United Kingdom
• ⁷ Team Health Informatics, Institute of Cancer Research, London, United Kingdom, London, United Kingdom
• ⁸ Global Business School for Health, Faculty of Population Health Sciences, University College London, London, England, United Kingdom
• ⁹ UK Sepsis Trust and Global Sepsis Alliance, Birmingham, United Kingdom, Birmingham, United Kingdom
• ¹⁰ Imperial College Healthcare NHS Trust, Faculty of Medicine, Imperial College London, London, England, United Kingdom
• ¹¹ Chelsea and Westminster Hospital NHS Foundation Trust, London, United Kingdom
• ¹² PPI Representative, Oxford, England, United Kingdom
• ¹³ School of Medicine, Cardiff University, Cardiff, United Kingdom, Cardiff, United Kingdom
• ¹⁴ School of Public Health, Faculty of Medicine, Imperial College London, London, England, United Kingdom

Introduction: The fight against sepsis is an ongoing healthcare challenge, where digital tools are increasingly used with some promising results. The experience of survivors and their family members can help optimise digital alerts for sepsis. This study pairs the experiences of survivors of their sepsis journey and family members with their knowledge and views on the role of digital alerts.Methods: A qualitative study with online semi-structured interviews and focus groups with sepsis survivors and family members in England. Data were analysed inductively using thematic analysis.Results: We included 11 survivors, and 5 family members recruited via sepsis charities and other social media, for a total of 15 sepsis cases. Identified categories correspond to the three stages of the sepsis journey: 1. Pre-hospital, onset symptoms and help-seeking; 2. Hospital admission and stay; 3. Post-sepsis syndrome. The role of digital alerts at each stage of the sepsis journey is discussed. Participants’ experiences were varied, previous sepsis awareness scant, and knowledge of digital alerts minimal. However, participants were confident in the potential of alerts contributing along the sepsis journey. They perceived digital alerts as important in healthcare professionals’ decision-making to expedite identification and treatment of sepsis and suggested their expansion across healthcare services. Participants expressed that awareness should be increased among the general public about digital alerts for sepsis/deterioration. Discussion: In light of sepsis’ insidious and variable manifestation, the involvement of patients and family members in the development of digital alerts is crucial to optimise their design and deployment towards improving outcomes. Digital alerts should enhance the connection across healthcare services as well as the care quality. They should also enhance the communication between patients and healthcare professionals.