Data

Data is a vital resource.  Through technology, it’s being increasingly shared and used (securely) by the healthcare professionals that support us, to improve wider NHS/care services and to do research.

While the data responsibilities of healthcare organisations are really important, equal attention should be given to the people’s perspective. We, as individuals, should be made aware of and understand how our data is used. Being more informed can help us to have a constructive dialogue and assist our decision-making (for any consent options) on how our data is used.

So have a look at our film and let’s start to talk about #ourHealthcareData.

Continue reading for some frequently asked questions related to the use of data in healthcare.

Q. What do you mean by staff involved in my ‘individual care’?

These are the health and social care staff that directly support your specific care. This includes your GP, the doctors and nurses that help look after you if you visit hospital, or community or social care staff that might support you in your own home.  These staff have appropriate access to relevant data about you so that they can better support your needs.

Q. How is my data used to improve wider NHS and care services?

Your data is generally anonymised, so that you can’t be identified. How this is done might vary.  Information that could identify you like your name and address is usually removed, possibly along with other details like your date of birth.

One of the main healthcare data initiatives in Scotland is the SPIRE project (this link will take you away from our website). It will use data from GP practices so that the NHS can improve the quality of care for patients, better plan services for people with health needs and support research into new treatments for particular illnesses.

Q.  Can I consent to how my data is used?

You may have consent options for how your data is used to improve wider NHS and care services.

For example, you can opt out of SPIRE project by completing a form at your GP practice. However, your information will still be included in what is known as “aggregated data”. This is combined with lots of other patients’ information to determine, for example, the overall number of patients registered in your practice who are in a certain age group or who have a certain illness.

Q.  What are the benefits to using our data to improve wider services?

There are many potential benefits for the public.

The SPIRE project has videos and more information about its benefits at http://spire.scot/a-change-for-the-better (this link will take you away from our website).