Data strategy for health and social care
The Royal Society of Edinburgh (RSE), Scotland’s National Academy, in conjunction with the Young Academy of Scotland (YAS), welcomes the opportunity to respond to the Scottish Government’s consultation on the Data Strategy for health and social care. We are well placed to offer supporting evidence to this consultation by drawing on our varied expertise across health and social care. A working group was formed to contribute to this consultation response, including experts in medical research, bioinformatics, clinical trials, artificial intelligence, big data, and medical statistics.
Given the length and breadth of the consultation, our response does not attempt to address every consultation question in turn, but rather responds to a series of questions in accordance with the expertise of working group members.
Methods that enable health and social care data to be created and appended without relying on individual consent should be explored in a way that maintains public trust in the ability of organisations to act as trustworthy stewards of personal data.
More should be done to communicate the purposes for which data is being used through carefully considered communication strategies or Government statements. Every effort should be made to ensure individuals understand how their data is used and for what purpose.
The perpetuation of an increasingly complex care landscape will likely further exacerbate existing regional inequalities, such as those in the ability of Scottish health and social care services to collect data to serve those with protected characteristics. This complexity is compounded by the irregular quality of data produced by these different bodies.
There is a general skills gap within the digital economy, particularly within data management. There is already a growing need to re-skill people working within sectors.
It would be helpful to have clear statements/guidance from the Government around what is and is not possible when using data, in order to boost confidence levels in the use of data among those who require it in their working practice.
It would be worthwhile to consider how population health researchers can, with consent, obtain access to the wealth of health data that is collected by technology firms such as Apple, Fit Bit, and Google Fit. The data that is collected through these sources may have the potential to prevent ill health and provide new insights into diseases.
There is a need for ongoing, centralised, routine maintenance and enhancement of quality conducted on data sets. Currently, there is a tendency to leave data accumulating and only assess its quality as and when it is required. A cultural shift is required to move away from spending long periods of time cleaning data towards proactively monitoring datasets before they become out of control.
RSE contends that both industry and innovators should widen the range of health and social care data that are used to improve outcomes. For example, using more qualitative data, such as patients’ thoughts/feelings, in clinical trials.
There is a relative scarcity of public funding for clinical research in the UK, such as clinical trials, in both commercial and public sector research. We suggest that the health and social care sector should work with commercial enterprises to enable organisations to target new medicines and develop effective interventions at a faster rate.
RSE note the immense potential of artificial intelligence, when used appropriately and well, to improve the delivery of health and social care. However, more work needs to be undertaken to ensure the appropriate use of artificial intelligence technologies and techniques, including machine learning, for example, to train against biases and mitigate against misdiagnoses.