Independent Expert Group for the Unlocking the Value of Data Programme report: SG response

Annex A: Recommendations and Actions

Recommendations

1. Engage in ongoing meaningful public and practitioner involvement and review throughout the data lifecycle

2. Engage with expert stakeholder groups

3. Engage the general public

4. Enable early adoption of Guiding Principles in targeted policy areas

5. Enable awareness of the data held

6. Enable a streamlined approach to data access

7. Enable shared standards and protocols and enable high standards and best practices

8. Enable existing intermediaries and join up

9. Enable collaborative research in this area including the collation of further evidence on blockages and proof of concept research

10. Enable user-centred approaches

11. Enable further investigation into technological opportunities

12. Ensure action plans, resources and conditions are in place

13. Ensure reasonable public benefit rationale provided by those seeking data access, informed by publics and reviewed and verified over time

14. Ensure Data Protection (DPIAs) and Equality Impact Assessments (EQIAs)

15. Ensure red lines on access for certain purposes

16. Ensure transparency from public sector in data access provisions and from private sector about their access to this data

17. Ensure oversight is appropriately resourced

18. Ensure collaboration and further input around benefit-sharing

19. Ensure the public can trust the companies accessing the data

Actions (in progress or planned)

Explore how technology could be deployed to support high-quality and scalable public participation (CivTech Challenge 10.7). (Recommendations 1, 3)

Develop an operational framework regarding private sector access to data for public good, for research purposes (Research Data Scotland). (Recommendations 2, 3, 4,16)

Develop a consistent model for public participation and engagement for the use of health and social care data (Health and Social Care Data Strategy). (Recommendations 1, 3)

Work with partners to outline use cases for industry and research access to data, being clear about the benefit and risks to the population of Scotland (H&SC Data Strategy). (Recommendation 1)

Explore the feasibility of piloting a benefit-sharing model, focused initially on controlled access to NHS Scotland personal data by the private sector. (Recommendations 1, 2, 3, 4, 18)

The Scottish AI Register enables public sector organisations to be open and transparent about their use of AI, and to follow best practice in the development, procurement and use of AI. (Recommendations 1,3, 7, 16)

Formalise industry and research representation in the strategic governance of health and social care data, ensuring the perspective of research and innovation is consistently represented (H&SC Data Strategy). (Recommendation 2)

Consider how the Life Sciences Industry Group and NHS Research Scotland Industry Partnership Group could be used to support engagement and consultation with the life sciences sector. (Recommendation 2)

Develop a federated national data catalogue to aid data discovery and linkage by public sector organisations. (Recommendations 5, 6, 7)

Develop and maintain clear and easy-to-use documentation on data sources, in the health and care sector (H&SC Data Strategy). (Recommendation 5)

Continue to develop a metadata catalogue of available public sector data about people, places and businesses (Research Data Scotland). (Recommendation 5)

Open data (or data with open metadata) is being made available via https://find.data.gov.scot/ (Recommendation 5)

The ODI Data Spectrum has been developed to help people understand the language of data. (Recommendation 5)

The RDS Researcher Access Service enables academics and data users to access secure data for public good. (Recommendations 6, 8)

RDS is working with the Scottish Safe Havens Network towards a single system approach to sensitive data research in Scotland, including for private sector research of public benefit. (Recommendation 6)

Establish a National IG Programme, aligning relevant strategies and strengthening the IG ambition to maximise the realisation of benefits from digital and data-driven health and social care innovation (H&SC Data Strategy). (Recommendations 6, 12)

Create clarification of the terms for access and use of data for industry projects including approval and controlled access pathways to ensure ethical use in the public interest (H&SC Data Strategy). (Recommendations 6, 13, 15)

The ICO Code of Conduct for health and care can be adopted by public sector organisations. (Recommendation 7)

Create clear governance on decision-making regarding adapting current standards and implementation of new standards (H&SC Data Strategy). (Recommendation 7)

Set out information standards for Scotland’s health and social care sector to improve the quality of data and enable successful outcomes of sharing (H&SC Data Strategy). (Recommendation 7)

Explore how approvals for access to data for research might be accelerated through best practice and standard setting for the operation of data safe havens. (Recommendation 7)

Consider potential benefits of independent assurance of operating standards in conjunction with the National IG Programme and our work on cyber security (H&SC Data Strategy). (Recommendation 7)

The Scottish Government’s Data Technical Policy function is improving the quality and accessibility of data and operates a community of practice for Data Standards and Open Data. (Recommendations 5, 7)

Explore how to increase the population and data coverage of data safe havens to support data-driven research and innovation at greater speed and scale (H&SC Data Strategy). (Recommendations 8, 12)

Support collaborative data-driven research and innovation across the UK and internationally where this has public benefits for Scotland (H&SC Data Strategy). (Recommendation 8)

Explore how approvals might be accelerated through best practice and standard-setting and consider potential benefits of independent assurance of operating standards (H&SC Data Strategy). (Recommendation 9)

The Information Governance (IG) Review report proposed a series of recommendations to identify blockages with the current system of data access (health). (Recommendation 9)

RDS’s review of operational practice has contributed to the evidence base regarding private sector access to data for public good. (Recommendation 9)

The SG and public sector partners are applying the Scottish Approach to Service Design approach, utilising a common set of tools and practices. (Recommendation 10)

The Scottish Government has invested in in-house data architecture and data science capability. (Recommendation 11)

Develop the specialist Digital, Data, and Technology (DDaT) professional workforce by conducting a review of roles, career pathways and training needs to inform recruitment and retention. (Recommendation 12)

Create clear guidance on data-handling and sharing to empower staff to effectively access and share data, through the National Information Governance Programme (H&SC Data Strategy). (Recommendation 12)

Ensure that appropriate processes, networks, and channels are in place to facilitate and support the sharing of good practice relating to digital technologies and digital skills (H&SC Data Strategy). (Recommendation 12)

Publish metadata that clearly describes information held by organisations, supported by APIs, to aid data discoverability across the health and social care data sources (H&SC Data Strategy). (Recommendation 12)

The Scottish Government has developed a Data Protection Impact Assessment (DPIA) template for wider adoption. (Recommendation 14)

RDS is developing an approach to IG for research based around ‘effective anonymisation’. (Recommendation 15)

The Scottish Government and partners have contributed to the development of Scotland’s third national Open Government action plan. (Recommendation 16)

Examine the utility of a data use registry. (Recommendation 16)