Health and social care - data strategy: consultation analysis

Additional information

The consultation ended with Q15 which allowed respondents to provide further information they felt could be useful. Most comments aligned with themes already outlined in this report, highlighting the value of health and social care data and the importance of information governance. This chapter summarises other themes evident at Q15.

Further actions or considerations

A variety of actions were suggested by a few respondents, mostly individuals, to ensure Scotland remains at the forefront of data enabled innovation in health and social care. These included: investing in data infrastructure and the standardisation of data collection; addressing governance issues which create barriers to sharing data within the NHS; using policy levers to encourage Scotland's business, research and public sector to play a role; encouraging greater engagement and data sharing with the third sector and the independent social care sector; piloting data sharing to get feedback from the public as service users; and opening Scotland's data landscape to clinical trials. Two individuals stated money should not be spent on data initiatives.

"We also feel there is opportunity to go further in the strategy to develop a globally leading environment that will support collaboration between Scotland's health and care system and the Life Science industry… We would also like to see further recognition of the international aspect of data and the need to collaborate internationally as we did in our response to the Covid-19 pandemic. Scotland has much to learn and contribute to on an international stage–" - Scottish Industry Life Sciences Group's subgroup on Digital & Data

Equality and human rights considerations

A small number called for an equalities and human-rights based approach. This included gathering equalities data, co-designing with marginalised groups or people with protected characteristics, aligning with Human Rights conventions, and producing Impact Assessments. These respondents argued that, without these steps, there was a danger that investment in digital infrastructure could widen inequalities. One anonymous organisation noted the need to include those who do not have digital records e.g. refugees, and South Ayrshire HSCP noted challenges around data access in rural areas.

Comments on the consultation and strategy

Some respondents shared mixed views on the strategy. Most were positive, stating it addressed the right issues and described it as a strong vision and a welcome and timely step. Conversely singular critical comments included; that the strategy is too heavy on ethics and governance; that it fails to take account of past failures; and a detailed response from Mydex CIC on why the proposals are not well thought through.

"Scottish Care commends the approach taken by those engaged in the development of the Strategy, which has prioritised meaningful and regular engagement with the independent social care sector as well as other stakeholders. We hope this approach will be maintained and built upon as the Strategy develops and implementation gets underway, and we look forward to further contributing positively." – Scottish Care