Health and social care data strategy: consultation analysis - easy read

Part 3 : giving power to innovators, industry and researchers

Innovators are people who come up with new ideas or ways of working.

Researchers are people who look closely at facts, figures and information.

Some people did not agree with data being shared or sold to private organisations:

• to make money
• for things that would not be good for the public
• to promote things that are bad for health

People said data could be used to make health and social care services better by:

• helping us find out new things and new ways of working
• helping us to see if things were working well
• supporting ways to decide on new policies and plans

Some people were not totally against organisations making money from data if there were ways to show it would be good for the public or patients.

Many people said that industry and innovators must:

• be open and honest about how data will be used
• make sure researchers only have access to data where people could not be identified
• follow data protection laws and ethical codes of conduct
• do more to tell people about the good things about using health and social care data

Infrastructure is the way a service is set up so it works well.

People wanted an infrastructure that:

• is safe and secure
• follows international standards
• works well with other systems
• has online files that can be easily shared and accessed anytime from any location
• can be checked to see if it is working well

There were different views about how easy it should be to get data.

Some people thought a new system should be clear and easy to use.

Other people thought security should be the most important thing.

People thought the Scottish Government should:

• have a Scottish organisation in charge of the new way of working
• give clear information on the most important things like:
  • who would be responsible for what
  • rules about ways of working
  • security
• give more resources - money, materials and staff to build the new way of working

People working in industry said that difficulties were:

• datasets held by different organisations
• data being able to link up
• data that was difficult to get
• data that was not good quality

A few people said there was not enough data about protected characteristics, equalities, and social care services.

Artificial Intelligence (AI) uses computers and machines to copy how the human mind solves problems and makes decisions.

There was a mix of views about using AI.

Most people were positive about using AI and thought it would:

• help people to get an earlier diagnosis and better treatment
• support money, materials and staff to be used in the best way
• help us to find out new things

Some people agreed that the use of AI would be a good thing if it:

• followed all rules
• was not used on its own, but had people checking it
• recognises and deals with any data or setup that is one-sided and does not give the whole picture of what is happening