Response 330455253

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Part 1: Empowering people

1. We all have different perceptions of what our health and care data may be:

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All personal medical and social data, held by primary/secondary and social care and other national datasets

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.

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Personal health data (diagnoses, treatments, results, and related correspondence)
Please select one item
Yes
No
Unsure
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Consent

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 that must be maintained when gathering, storing, and using health and social care data:

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Confidentiality safeguards. Where the data are stored/sent. Benefits of secondary uses.
Please select one item
Very Important
Fairly Important
Neutral
Not Important
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Explain safeguards and benefits clearly. Promotion by Scottish Government

4. When considering sharing of your data across the health and social care sector:

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Only those situations that I have not consented to
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Monitor/audit care. Research

5. More people are using wearable devices to track their own health including sleep activity, mindfulness, heart rate, blood pressure and physical activity.

Please select one item
Yes
No
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I would be happy to share these data

Part 2: Empowering Those Delivering Health and Social Care Services

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

Please rank these from 1 to 7
Data visualisation
6
Understanding/use of management information by managers
2
Understanding of what data exists and where to find it
3
Knowledge of how to access data
4
Confidence in using data
5
Understanding of governance
1
Other (Please specify below)
7
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Online learning, via professional CPD portals
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Widely accessible pulbic information campaign, with clear video abstracts and advocacy for the advantages of use and safeguards against disclosure.

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

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Better structured data, enforced data entry (not free text), CHI for all data
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Environmental data (temperature, pollution etc) and healthcare spending data to investigate economic and environmental causes of disease

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

Please select one item
Agree
Disagree
Unsure
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Any benefits must outweigh risks (e.g. time spent)

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

Please select one item
Agree
Disagree
Unsure
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Protection of vulnerable individuals. Better primary and secondary prevention. Delivery of well-informed healthcare throughout the country if a patient falls ill away from home, or needs to be seen by a specialist in another healthboard (e.g. national PACS enables us to do this for imaging very effectively, but other medical records are not available nationally)

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

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Entire contents of primary and secondary healthcare, prescribing, imaging, and laboratory datasets

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:

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Understanding health problems, co-morbidities, frequency of problems
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If the public information campaign about data use clearly describes the advantages of data sharing, and patients are allowed to opt out.
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Commercial gain
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This can be published in a research register, but should be described broadly by the public information campaign.

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

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Secure datasets with access controls via safe havens, but with the versatility required to enable the use of data by researchers in different ways with different software applications (and this may have to include data flow out of a safe haven)
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Data flows need to enable recruitment to clinical trials, without the need for in-person consent.

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:

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Yes, but the AI decision making tool must have been shown to be clinically effective in a high quality research study before purchasing it and using it in clinical care
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Evidence-based indication/tool

Overall Reflections

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

N/A

About you

Are you responding as an individual or an organisation?

Please select one item
(Required)
Individual
Organisation