Closing the UK care home data gap – methodological challenges and solutions

Abstract

UK care home residents are invisible in national datasets. The COVID-19 pandemic has exposed data failings that have hindered service development and research for years. Fundamental gaps, in terms of population and service demographics coupled with difficulties identifying the population in routine data are a significant limitation. These challenges are a key factor underpinning the failure to provide timely and responsive policy decisions to support care homes.
 In this commentary we propose changes that could address this data gap, priorities include: (1) Reliable identification of care home residents and their tenure; (2) Common identifiers to facilitate linkage between data sources from different sectors; (3) Individual-level, anonymised data inclusive of mortality irrespective of where death occurs; (4) Investment in capacity for large-scale, anonymised linked data analysis within social care working in partnership with academics; (5) Recognition of the need for collaborative working to use novel data sources, working to understand their meaning and ensure correct interpretation; (6) Better integration of information governance, enabling safe access for legitimate analyses from all relevant sectors; (7) A core national dataset for care homes developed in collaboration with key stakeholders to support integrated care delivery, service planning, commissioning, policy and research.
 Our suggestions are immediately actionable with political will and investment. We should seize this opportunity to capitalise on the spotlight the pandemic has thrown on the vulnerable populations living in care homes to invest in data-informed approaches to support care, evidence-based policy making and research.

Hospital admissions from care homes in England during the COVID-19 pandemic: a retrospective, cross-sectional analysis using linked administrative data

“…There remains a need to better understand the impact of the pandemic on residents’ health status and quality of life and to plan for the capacity required to address unmet care need. However, these efforts have been hampered by the lack of a central register of care home residents and the challenge to identify residents in national, routinely collected healthcare data [ 20 ]. We therefore used an address-based linkage methodology to examine national trends in elective and emergency hospital admissions for individuals living in residential and nursing homes in England, as well as changes in the primary reasons for admissions during the first wave of the COVID-19 outbreak.…”

Pain assessment and management in care homes: understanding the context through a scoping review

“…increased resident comfort), then shifts in attitudes and norms can occur more readily [ 28 ]. Pain in frail older people needs to become part of the regulation of care homes, although it has been argued that this may not happen until care homes adopt an electronic minimum data set or equivalent tool [ 29 ]; this has gained more interest recently, stimulated by conversations as a result of the Covid-19 pandemic [ 30 ].…”

The Effect of Providing Staff Training and Enhanced Support to Care Homes on Care Processes, Safety Climate and Avoidable Harms: Evaluation of a Care Home Quality Improvement Programme in England

“…In conducting a mixed methods evaluation, our work gives a clear idea of enablers and barriers to implementation, as well as potential success factors of relevance to other, similar QI programmes [ 46 ]. In reporting detailed SPACE programme aims and activities using a structured template, we attempt to enhance the clarity and replicability of SPACE activities (and evaluative work) by others [ 47 , 48 ].…”