Health and social care - data strategy: consultation

5. Part 1 - Empowering People

We believe people should have greater access to and greater control over their own health and social care data. This includes the ability to view and request updates to information contained in their records, and access information such as test results, letters and treatment and care plans.

Greater access and control

Engagement with individuals, advocacy and representative groups has consistently told us that their experience of data can be repetitive and fragmented when it comes to providing the same information to GPs, hospitals, social care professionals. For example, data provided to GPs may not be routinely available to clinicians and staff in other care settings such as those you interact with in a hospital, nor is it routinely available for health research in the public good. We heard in the recent consultation on the National Care Service that 85% of individuals and 89% organisations who responded, agreed, or strongly agreed^[3] with the statement: 'There should be a nationally-consistent, integrated and accessible electronic social care and health record'.

We also heard in our engagement that greater access to and control over data will not only empower people to better understand and manage their own wellbeing, but also crucially bring greater transparency. This was particularly true of individuals that had experienced discrimination and stigmatism. Our ambition is that by giving individuals greater access to and control over their data we can generate increased fairness and trust in our health and social care services. To achieve this ambition, we aim to allow individuals to check and update their personal data, (for example their ethnicity) where it is safe and practical to do so, as part of a development of a 'digital front door' to health and social care services.

Although greater access and control will facilitate the empowerment of individuals, this can only truly be achieved if their data is presented in a way that is accessible and understandable to all. This impacts on how data is recorded by professionals, but also raises important considerations for many people of Scotland. Including children and young people and those people who may not use English as their first language, as well as general concerns over literacy.

Though we know this ambition will empower many individuals, we also understand that many people who do not want the responsibility associated with greater access and control. Some simply may not have the capability or capacity to take advantage of this opportunity. Therefore, we must explore opinion on how this Data Strategy can work for all individuals. Ensuring it does not create greater inequality through a lack of access or through digital exclusion.

As we seek the grasp the opportunities presented by developments like those in the field of Artificial Intelligence (AI) to better health and social care data usage, we want to ensure our health and social care data is accurate, complete, and up to date. Where biases exist, we must appropriately prevent them, ensuring we do not inadvertently create greater inequalities.

Your health and social care data rights

The Data Strategy will also set out our ambition for individuals to have a greater say in how their data is shared. This is particularly important to help individuals in not having to re-tell their 'story' multiple times. Several test projects in the UK health and social care eco-system have explored the possibility of people being able to 'toggle' sharing of their health and social care data on and off depending on who they wish to share with. However, the Strategy must also be clear on the rights that people have to their information, explaining the importance of setting out the legal reasons for collecting the data, how their data will be used and why. It must also be clear on how an individual can easily access and change data where this is appropriate.

We recognise that the public hold subtly different views regarding people from the public/private/voluntary sectors accessing data for various uses – from development and improvement of public services through to the generation of private sector profit.

The Strategy will also consider how individuals rights are properly maintained in situations where age/capacity/capability may make it difficult for the individual to exercise their rights. We have so far heard this is particularly true in situations such as the rights of children versus the rights of parents or the rights of disabled individuals versus the rights of carers.

Digital exclusion

Finally, whilst technology can and does transform lives for the better, we must ensure that no one is left behind. We acknowledge that our Data Strategy must account for those in our society who are digitally excluded and that non-digital routes to access health and social care data must remain an option to all individuals.

5.1. Questions Part A

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

1A. 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?

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

4A. 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?

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

5A. 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?