Title: Experiences of COVID-19 and recovery: learning from polyphonic voices for communities, policymakers and health and social care providers.
Funder: Economic and Social Research Council

Abstract: Objectives: 1.To understand the different ways in which COVID-19 (which has not led to an ICU admission)* has been experienced in Britain. 2. To develop new approaches to engage with people from BAME and other seldom heard communities in planning and conducting the research. 3.To publish an experience-based online platform section on COVID-19 (for patients, policymakers, care providers) as part of Healthtalk.org. 4. To work with communities, patients, carers, commissioners and service providers in health and social care to configure support for survivors and resources for communities and services. 5. To compare findings with those identified by our international collaborators through the DIPEx International collections on Experiences of COVID-19. *We exclude ICU experiences from this study because a sister project, for Healthtalk, with this group of patients and family members started Sept 2020.

Lay abstract: The study aims to improve understanding of the ways in which patients from diverse communities have experienced COVID-19, provide an online resource as part of Healthtalk.org (to inform and support individuals and their families) and to co-produce flexible resources to support health and social care staff, communities and policy makers to 'build back better'. The coming months, while the experience of the first year of the pandemic is still in focus, provide a critical opportunity to capture and learn from people's narratives of COVID-19. Interviewing people about their experience will help us to understand how they made sense (or struggle to make sense) of what has happened to them, the recovery process and their ideas about how services and community support could be improved. We will use interviews to document and understand what it has been like for people living with and through COVID-19 during these exceptional times and then use what we have learnt to develop resources for the public, community and services. OBJECTIVES 1. To understand the different ways in which COVID-19 has been experienced in Britain. We will conduct in-depth interviews with a national, diverse sample of around 75 patients, who have managed/been cared for in different (non-ICU) settings. 2. To develop new approaches to make the research relevant to people from black and minority ethnic communities (BAME), including migrant workers. Our team of researchers with expertise in ethnicity and health will work with their networks and PPI on the design, conduct and application of the research. 3. To develop an experience-based online resource (for patients, public, policy makers, care providers) as part of the online platform Healthtalk.org. This well-established award winning site has, since 2001, published findings from over 110 studies in condition-specific sections, illustrated with video, audio and animated interview extracts. 4. To co-design, with communities, patients, carers, service providers in health and social care practical applications of the findings. This may include (in the shorter term) resources to support recovering (long) COVID-19 patients and learning how to 'build back better' services and community resources. 5. To compare findings with those identified by our international collaborators who are independently collecting COVID-19 narratives. The collaborators from 14 countries worldwide are meeting for workshops from December 2020-2022 to prepare cross country analyses and resources in addition to the existing online platforms (similar to Healthtalk.org in UK) in each country. We have assembled a team with expertise in ethnicity and health (Douglas, Rai, Qureshi), research on patients' experiences (McNiven, Ziebland), General Practice (Salisbury, Dixon), PPI (Ali, Hussain), service improvement (Locock, Hinton) and delivery of online resources (Sanders). Our PPI co-applicants, advisory panels and our wider networks including BAME communities will help ensure that our interview focus, recruitment methods and the resources we create are inclusive and remain relevant throughout and beyond the 18 month project. Outputs include a new COVID-19 section on Healthtalk.org (~75 interviews and 35 themed summaries), catalyst films and a theatre workshop, peer reviewed papers, reports, a methods paper on conducting remote research with seldom heard groups and cross country comparisons with our international collaborators.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: INFECTION