Crowdfunding: the option hidden in plain sight?
Written by: Carmen Paputa Dutu
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. 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 (although your information will still be included in what is known as “aggregated data” i.e. 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).
The Farr Institute is a UK-wide research collaboration involving academia and health organisations which seeks to use data to advance the health and care of patients. It has a series of case studies showcasing potential benefits of health research at http://www.farrinstitute.org/public-engagement-involvement/100-ways-of-using-data-to-make-lives-better (this link will take you away from our website).
Written by: Alicia Ridout