The Development of a Care Home Data Platform in Scotland:

Insights from the Care Home Innovation Partnership, Lothian

Lucy Johnston, Jo Hockley, David AG Henderson, Susan D Shenkin

Care homes collect a large amount of data about their residents, and the care provided, but there is a lack of consistency in how this information is collected. There is also a need to minimise the burden of data collection on staff, ensure information informs and supports person-centred care, and that this data is then of use to regulatory agencies, policy makers and researchers.

We examined the data collected in six Care Homes in Lothian, Scotland. We extracted the meta-data collected, cross-referenced definitions and assessed the degree of current harmonisation between individual care homes and with data sets currently in use in Scotland and internationally. We interviewed the care home managers to identify data collection processes, views and experiences of current data availability, gaps, access and issues of capacity and capability in relation to data management and analytics.

Our work has illustrated the scale of the data collected by care homes, the varied formats and heterogeneity of scope and definition. The inventory of 15 core data items that emerged, serves to expose in detail the foundations of care home data sets. The groundwork illuminated the heterogeneity in tools and assessments used to generate the data and the way in which the data is to be used, affects how it is specified and frequency of collection. By making known the reality of how and why care home data is collected, we can understand better the nuances of each individual data item that collectively create a data platform. We make four recommendations for the development of a national care home data platform.

The GEARED Up project:

Care Home Data: Governance, Ethics, Access
and Readiness through an Exemplar Demonstration

In Scotland there is currently no consensus or defined process for how to get ethical approval for care home research, service evaluations in these settings and for commercial companies who are involved in Innovation Challenges/Test Bed work. The GEARED Up project has been designed to demonstrate how the current ethics and governance framework for care home data can be navigated. In addition the exemplar work has the potential to provide large and high impact benefits including contributing learning to enable care home participation in clinical trials and enhance understanding of how to, for example, collect baseline data for epidemiology for future health emergencies. To achieve this we want to collaborate with data providers to:

• Explore the current ethics/governance frameworks that oversees care home data and document in detail the processes required to access data that can be processed by (a) commercial companies and innovation challenge solvers and (b) Research and Evaluation studies in Scotland
• To carry out the work required to establish the appropriate permissions for individual level data on care home residents to be used in innovation challenges, such as the current SBRI Challenge, and a robust and sustainable system framework for future access for industry innovation projects, academic researcher and practitioner led service evaluations.
• Collaborate and consult with relevant stakeholders to demonstrate the access frameworks and routes, by carrying out the work required to apply for the appropriate permissions, to collect, share and store specified individual resident level data and provide access to named/approved Data Processors.