This blog explores the attitudes that the people of Scotland have in relation to their health and care data and identifies seven main relationship types that exist.
Please mind the gap
Imagine sharing a lengthy train journey with others. From beginning to end, imagine how often you might hear ‘mind the gap’ messages about embarking and disembarking safely. Picture how navigating the gap might slow down others, and you, when your focus is on making your connection in time to arrive when and where needed.
Just as negotiating physical gaps can make us feel less efficient, so too can gaps in health and care data. But the national Health and Care Data Strategy is an ideal opportunity for us to try to close them.
In my role as one of three Chief Officers in Public Health Scotland (PHS), I often attend meetings or am part of discussions where people express a desire for consistent, quality data that can support effective decision-making at a local and national level, and that can enable improvements to be scaled and sustained.
Actually, we do have good local primary and social care data, but the lack of consistency in approach and methodologies, including levels of data literacy across all parts of the system, means that we can’t aggregate it and use these data beyond local boundaries.
We need to sort these gaps – sooner rather than later. If we are to get the model for a National Care Service right, we will need to have the best possible data available to support its design and the evaluation of its impact. This applies equally well to the continued transformation of our NHS.
Improving data collection and management
End users of data need to be confident that the data they are using are ‘fit for purpose’ and that decisions based on them will be robust. However, end users can often be those who are responsible for the generation and capture of such data, and so required improvements are in their gift to make.
Work supported in recent years by Healthcare Improvement Scotland and NHS National Services Scotland Information Services Division (ISD), and now PHS, has led to a number of improvements in primary care data. But there is more to do both here and in social and community care where the emphasis on data underpinning effective decision-making is different to that in health.
The will to improve is there, and the improvement mantra of ‘will, ideas and execution’ is highly relevant to the issues around data and its variable quality – but we need to empower the ‘will’ and ability to ‘execute’.
Supporting the health and care workforce to understand the fundamentals of good data collection and management is central to a high impact data strategy, where leaders and managers across the health and care system can convert these into intelligence and actionable insights.
Getting to the heart of it
A national health and care data strategy that has the necessary suite of enabling actions and levers for change will help us to address these persisting challenges.
The recently established Data Strategy Working Group, chaired by Colin Birchnell from COSLA’s Local Government Digital Office, is ready for it. We have been exploring what these actions should comprise of if we are to truly get to the heart of improving the gaps in health and care data.
What do we need to do?
Clearly defined, common data definitions would help enormously with data sources being properly documented, curated, and validated. We also need to agree on common data standards, and the work led out with health and care in Scottish Government will be critical to enable delivery of key elements of the health and care data strategy.
We need the Health and Care Data Strategy to be a ‘seminal’ document that is shaped by the diversity that exists across Scotland’s communities, not just the usual few ‘experts’. So, when the draft strategy comes out for consultation in May this year, please take a few minutes to give us your feedback as we need to ensure that the final strategy is relevant and useful to many different people if it is to deliver on its aims and goals.
This research is helping shape our Data Strategy for Health & Social Care. We wanted to hear the views of people in Scotland, whose voices are often less heard, on accessing, sharing and controlling their own health and care data.
A head of Open Government brings vital questions and challenges to the group that aim to help turn the grit in the oyster into a pearl.
Our efforts did not go unnoticed at this year’s Holyrood Digital Health and Care Awards 2022 ceremony.
In October 2021 with the publication of the refreshed Digital Health and Care Strategy, we committed to developing Scotland’s first dedicated Data Strategy for Health and Social Care.
The update included a presentation on the findings from a review of existing literature on health and care data with a specific focus on public engagement.