Health and social care - data strategy: consultation analysis

Appendix C: Consultation questions

Part 1 - Empowering People

1A. We all have different perceptions of what our health and social care data may be. When considering the term 'your health and social care data' what does this mean to you and what do you consider it to be?

2. Our ambition is to give everyone greater access to and a greater say over their health and social care data. Health and social care data examples include results from a blood test, a diagnosed condition or interaction with specific health and social care services.

2A. When thinking about accessing your own health and social care data, what data about you would be your priority for having access to and greater control over?

2B. When considering the rights of individuals who are unable to interact with their own health and social care data, do you feel that delegating access to a guardian/carer/trusted individual would be appropriate?

Yes / no / unsure

If yes, what safeguards need to be in place?

3. We are committed to providing clarity over how your data is used and the need for this to be built on ethical principles. When thinking about the ethical principles (read our ethical principles on gov.scot) that must be maintained when gathering, storing, and using health and social care data:

3A. What information would you find most useful in providing clarity over how your data is used in a consistent and ethical manner?

3B. To what extent do you believe it is important to collect data to enable our health and social care services to understand how they are serving those with protected characteristics?

Very important / fairly important / neutral / not important

3C. When thinking about health and social care professionals accessing and using your health and social care data, what more could be done to improve your trust?

4A. When considering sharing of your data across the health and social care sector, are there any health and social care situations where you might be uncomfortable with your data being shared?

4B. Under Data Protection legislation, your health and social care data can be shared in order to administer care. For what other purposes would you be comfortable with your health and social care data being shared within the health and social care sector?

5A. More people are using wearable devices to track their own health including sleep activity, mindfulness, heart rate, blood pressure and physical activity. Do you gather your own health data for example measuring activity, sleep patterns or heart rate through a mobile phone or watch?

Yes / no

If yes, would you want to share this data with health and social care professionals, and for them to use it to improve the services you receive?

Part 2 - Empowering Those Delivering Health and Social Care Services

6. Considering skills and training opportunities for those delivering health and social care services:

6A. What are the top skills and training gaps relating to data in Scotland's health and social care sector?

• Data visualisation
• Understanding/use of management information by managers
• Understanding of what data exists and where to find it
• Knowledge of how to access data
• Confidence in using data
• Understanding of governance
• Other

6B. How do you believe they should be addressed?

6C. What actions must be taken as a priority to ensure that the public have access to health and social care data that they can understand and use?

7. Thinking about improving the quality of data that is used by health and social care services:

7A. What three things are needed to improve quality and accessibility?

7B. If you are responding on behalf of an organisation, what role do you believe your organisation has to play in improving accessibility and quality of health and social care data?

7C. What data, that is generated outside of the health and social care sector, do you think could be made available to health and social care professionals to improve health and social care outcomes in Scotland?

8. We have heard that a more consistent approach to data standards will help improve insight and outcomes for individuals:

8A. To what extent do you agree with the proposal that Scottish Government should mandate standards for gathering, storing, and accessing data at a national level?

Agree / Disagree / Unsure

8B. What data standards should we introduce?

9. When considering the sharing of data across Scotland's health and social care system:

9A. Do you agree with the idea that greater sharing of an individual's health and social care data between the organisations in the health and social care sector will lead to better quality services?

Agree / Disagree / Unsure

9B. If you are a clinician – how could we improve patient safety through better sharing of data and information?

10. Thinking about the actions needed to improve the quality of management information and internal reporting data across health and social care:

10A. What are the priority pieces of management information needed (that are not currently available) to provide better health and social care services?

10B. What is needed to develop an end-to-end system for providing business intelligence for health and social care organisations in Scotland?

11. Thinking about improving the quality and ability to reuse data sets across health and social care setting and for innovation & research:

11A. What key data sets and data points do you think should be routinely reused across health and social care to reduce duplication of effort and stop people having to re-tell their story multiple times?

Part 3 - Empowering Industry, Innovators and Researchers

12. When considering the ethics of accessing health and social care data for commercial, development and research purposes:

12A. How do you think health and social care data should be used by industry and innovators to improve health and social care outcomes?

12B. How can industry and innovators maintain the trust and confidence of the people of Scotland when using their health and social care data for research purposes?

12C. What do you believe would be unacceptable usage of Scotland's health and social care data by industry, innovators, and researchers?

12D. How should industry, innovators and researchers be transparent about their purposes in accessing, and the benefits of using, health and social care data?

13. We want to create an infrastructure that supports access to data for research and innovation in a safe, secure, and transparent way:

13A. How should the Scottish Government seek to store and share health and social care data for research in order that it can best facilitate easier access that is still safe and secure?

13B. What do you believe are the key data needs and gaps that are faced by industry, innovators, and researchers when it comes to Scotland's health and social care data?

14. Used appropriately and well, technologies such as Artificial Intelligence can help to improve decision making, empower health workers and delivery higher quality health and social care services to citizens, improving how you receive health and social care services:

14A. What are your views on the benefits of using AI to improve the delivery of health and social care services?

14B. What safeguards do you think need to be applied when using AI?

15. Please use this box to provide any further information that you think would be useful, which is not already covered in your response.