Using CRIS to map the impact of the COVID-19 pandemic – service user and carer priorities

This blog was written by Dr Anna Kolliakou, Clinical Informatics Interface and Network Lead and Professor Rob Stewart, Maudsley BRC Clinical and Population Informatics Lead.

In the wake of the COVID-19 pandemic there is a need for rapid research worldwide to assess its effects on individuals and societies. Through this we can better align our services with the needs of populations. This is particularly crucial for mental health, which has been cited as the next pandemic on the horizon.

Locally, our CRIS team have sought to respond to information requests from South London and Maudsley NHS Foundation Trust (SLaM) and have set up a number of projects to investigate the impact of infections, the changes in service use and the psychological effects of lockdown on mental health. Much of this work is now in the public domain.

We wanted to ensure that this research conducted by the Clinical Record Interactive Search (CRIS) group was informed by service users and carers and that their perspective was considered throughout the projects. Therefore, shortly after March 2020 we put together a CRIS Service User and Carer Advisory Group to consult on COVID-19-related CRIS research (CRIS COVID-19 SUCAG).

Work of the CRIS Service User and Carer Advisory Group

The group has been central to our work by acting as a point of contact for researchers seeking service user advice on CRIS studies relating to COVID-19 and promoting the service user/ carer perspective in these projects. Members of the group have helped identify and share good practice in service user and carer involvement. They have been building relationships between researchers and service users when designing studies, preparing grant applications, conducting research and disseminating findings. Importantly they have helped identify research priorities.

A particular area of focus for the group has been the SLaM COVID-19 response arising from CRIS research, and this was the focus for two sessions with Professor Rob Stewart, Maudsley BRC Clinical and Population Informatics Lead, and Dr Trudi Seneviratne, SLaM Clinical Director. This consultation has resulted in the group identifying a number of research priorities related to COVID-19 during the pandemic and post-pandemic periods.

CRIS research priorities going forward

Amongst these priorities are several around inpatient service use, for example investigating the change in inpatient bed availability and its impact on service use and demand, particularly paediatric beds by younger people.

Research to assess any changes in the impact on length of inpatient stays has also been highlighted, as well as further investigation of longer-term outcomes in the people who were rapidly discharged in order to free up inpatient beds around March/April 2020. There is also a pressing need to research changes in waiting lists and pathways into mental health care.

More specifically the group identified that there should be investigations of changes in perinatal mental health service use and also more studies of self-harm as an outcome (although accepting the current challenges of automatically ascertaining this in CRIS). Research on long COVID experiences was also prioritised. 

The group also raised several research questions around differences between groups and inequalities, that may been created or exacerbated by the pandemic. For example, age differences in Emergency Department presentations, particularly considering how presentations from adolescents and young adults might have changed. There is also a need to study gender differences in data trends presented (e.g., on mental health service use). More generally it has been flagged we should be investigating inequalities in access to physical healthcare services, experiences of waiting lists, and the impact these might have on mental health.

Research using CRIS has already identified shifts in the use of virtual care and the group suggested there should be further investigation into the benefits and risks of this increased level of virtual care since the onset of the pandemic. Housing issues and their contribution to social and economic challenges make up another area of possible research as does social prescribing and marketing, and the evaluation of these. Lastly the group called for more qualitative research into service user experiences to better understand the numeric data.

In collaboration with SLaM, the CRIS team will endeavour to take these proposals forward and continue to identify new research priorities within the shifting landscape of the COVID-19 pandemic and its effect on our mental health.