Issues relating to lack of insight
There were many concerns about how data is stored on a number of different systems. It is difficult to understand where data is stored, and then to navigate these systems to find a specific piece of data. Data suppliers are rarely told where the data they have supplied is published (assuming it is published at all), making it difficult for them to trace where their data has ended up.
It was also noted that not enough is known about local internal systems in care homes. There is a lot of variation between care homes, so it is hard to understand what is out there.
Access limitations (including information governance)
See also issues with data sharing.
People commented on the difficulties of 'complex and bureaucratic data access processes', often meaning they don’t have access to the necessary systems to view the data they need, or have permission to view data. There is seen to be variation both between HSCPs and even within an individual HSCPs.
Specific issue of accessing data from NHS and HSCPs
It is difficult for care homes to get accurate and quality data on service users from the NHS and HSCPs (such as hospital discharge letters and social work case files). Reasons behind this include General Data Protection Regulation (GDPR) barriers and not qualifying as next of kin.
These access difficulties lead to care homes being asked for the same data multiple times.
“not easy to access so care homes end up being asked for same info multiple times”
Practical access issues
Wi-Fi is not available in all care homes (or is often limited to a single office)
Participants commented that data often lacked context, and there was a need for 'narrative analysis' and 'qualitative stories behind the data' to help understand residents’ experiences. A more detailed breakdown of figures could give better context of the data submitted (mainly vacancies and staff in TURAS).
It was noted that the data available does not provide a coherent/compelling picture of what is happening in care homes.
Cause and effect
Contributing to this, someone commented on the need for more understanding of the reasons for trends.
“if there has been an improvement, what action resulted in the improvement?”
Resources to maximise use of data
Some smaller organisations don't have the resources to maximise the use of data.
Data not providing value to end users
- publications don’t answer questions people have locally (e.g. types of bed), so they can’t compare with other HSCPs. See quality / completeness of existing data and gaps in data
- “people are only collecting portions of data at a time so overall picture not complete”
Suggested solutions to lack of insight
Finding and accessing data
People were very keen to see the range of different sources of care home data consolidated. There were two main suggestions of how this could be done. Many participants asked for a “single source of data to support effective planning”. This centralised system could be directly accessed by data users, allowing them to access, analyse and download data in the format most useful to them (dashboard, creating reports, csv files etc.).
Another idea was a “’one stop shop’ for data, with links to the various sources and an easy guide of what to find where”.
Points relating to data access and information governance included:
- providing care homes with restricted access to social work case files for residents, meaning they have access to data at an early point
- HSCPs / PHS to routinely publish SOURCE datasets to local Care Home Sector
Data providing value to end users
- data users asked for “support to understand what the data is telling us”
- real time data synchronization among different tools - for example, a tool to group different dashboards by different providers
- develop analytical skills across the boards
- map of work that is going on to make sure work is not duplicated
“Learn what is being done internationally”
Examples to learn from
- Fife – Care at Home Collaborative supports sharing of data between providers and HSCP to help with delivery of services
- Dumfries & Galloway – Clinical data being shared between partners at a local level. Nationally, there is need to look at how personal data can be shared and accessed
- another area uses local data to look at Emergency Department admissions and link in with the Care Home teams to see if they had relevant support prior to admission, the pathway taken, and if that could be improved
- a participant gave an example of how they speak post Discharge to identify if discharge was the best possible. This discussion covers handover, Care home transfer document, meds, DNA returned etc.
- Perth & Kinross – uses the 'Care Opinion' platform for reviewing partnership services. The public can see comments too
- New Zealand and Canada – national social care datasets using Resident Assessment Instrument–Home Care (RAI-HC) – tracks all with long term conditions, whether in the community or in care homes, used for clinical and admin
If you have any questions about the contents of this document, please contact the Care Home Data Review team at SWStat@gov.scot
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