ABSTRACT
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.
Competing Interest Statement
The authors have declared no competing interest.
Funding Statement
This work was funded by Health Innovation South East Scotland in collaboration with the Chief Scientist Office
Author Declarations
I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.
Yes
The details of the IRB/oversight body that provided approval or exemption for the research described are given below:
Edinburgh Napier University
All necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived.
Yes
I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).
Yes
I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.
Yes
Footnotes
This work was funded by Health Innovation South East Scotland in collaboration with the Chief Scientist’s Office.
No conflicts of interest.
We would like to acknowledge the contribution of our care home partners in CHIP
Data Availability
Source data is available. Please contact the authors