Exploring the response to the COVID-19 pandemic: Co-creating healthcare system resilience
Research team: Dr Abigail Albutt, Darci Tilbrook, Dr Gemma Louch, Olivia Joseph, Dr Lauren Ramsey, Faiqah Quyyam, and Professor Jane O’Hara
Why is this project important?
Healthcare system resilience is a theory that has emerged over the past five years, that seeks to explore, describe and support health services to adapt and respond to variability in demand and resources. In this theory, it is assumed that a system that is resilient has adequate capacity within which it can adapt to challenges and disturbances. As has been witnessed since the beginning of the COVID-19 pandemic, clinical teams and healthcare services have undergone enormous changes and many reconfigurations. However, one understudied aspect of how the ‘system’ is able to adapt and respond is that of a key stakeholder – service users and their families. There is an increasing amount of evidence to suggest that service users and their families effectively ‘scaffold’ the healthcare system, by stepping in when care is suboptimal, or fails. Examples of this include chasing GP appointments, querying prescribed medication and self-management of complex care at home.
What are we doing?
In this project, we aim to explore the role of those who sit just outside of the healthcare system, in supporting the resilience of that system. Put simply, we want to understand and document what people are doing to support the safety of their health, the health of others, and how people use the healthcare system in response to the COVID-19 pandemic. To do this, we sought to explore this ‘scaffolding’ role within three key groups:
1) The general public – recruitment complete (longitudinal interviews with 21 people).
2) Patients with a chronic healthcare condition (breast cancer) that requires active treatment – recruitment underway (PhD Project – Darci Tillbrook).
3) Seldom heard communities (women from the South Asian community, people who are homeless, and refugees and asylum seekers) – recruitment underway.
People from across these three groups were interviewed virtually or in person. This allowed us to understand how they coped across the COVID-19 pandemic period, to keep themselves safe and ensure the safety of others. We sought to reach potential participants via a range of ‘remote access’ methods – social media, online support communities, and through key community contacts already working with seldom heard communities known within the scientific community to have heightened vulnerabilities with respect to COVID-19.
Within the seldom heard communities arm of the project we adopted a community research model. We took this approach as we recognise the limitations of academic researchers that do not have lived experience of a particular community, and the possibility that their social position introduces a power and privilege dynamic that may not result in authentic research findings.
The research team collaborated with community groups who supported the populations of interest (women from the South Asian community, people who are homeless, and refugees and asylum seekers). People employed by each community group participated in a one-day training course commissioned by the research team. The training covered the following content:
- What is qualitative research?
- Fundamental assumptions of qualitative research
- Basic interviewing technique
- Common problems with interviewing and how to solve them
We commissioned this training to provide community researchers with the tools, practical support and skills to collect the interview data on the research team’s behalf.
Patient and public involvement and engagement
Kate Smyth, a Lay Leader with the YH PSTRC, provided support throughout the project. Within the seldom heard communities arm of the project we worked closely with our community researcher collaborators around specific methodological issues e.g. recruitment, informed consent, study materials. Furthermore, we plan to work with our community researcher collaborators to develop plans for dissemination. Within the arm of the project focusing on patients with a chronic healthcare condition (breast cancer), we worked with a number of organisations during the interview recruitment phase including: Breast Cancer York, METUP UK, Secondary Breast Cancer Support Group, Bosom Friends, Breast Cancer Now, Younger Breast Cancer, Yorkshire Cancer Community, Be Cancer Safe Rotherham, Maggie’s Leeds, and Shine Cancer Support.
Outputs and Impact
- Oral presentation: HSR UK Conference, Online – July 2021.
- Oral presentation: Health Services Research Summer School 2021, Online – July 2021 (Darci Tillbrook).