Whenever we go to a GP, a hospital or a pharmacy, information will be collected about us and our medical history. Only healthcare professionals who are directly involved in your care will be able to access your full patient record which includes your medical history. However, some of the information from your record may also be useful for specific purposes beyond your individual care, to improve health, care and services through research and planning. People should be able to find out what’s allowed and what’s not, and how the data is kept safe.
There can be multiple purposes for using data, such as improving the health system and public policy, understanding the causes and risks of diseases, diagnosis, patient safety, as well as supporting individual care, the development of new treatments and the prevention of diseases.
Only health professionals have access to medical records. Strict controls are imposed on anyone else wishing to access this information for purposes beyond individual care, such as university researchers or private companies.
Some national organisations are responsible for monitoring and deciding which purposes can be pursued.
Whenever we go to a doctor or a hospital, they collect data about us, our health and our lifestyle. This is recorded and stored in our patient record. National health systems use this information to help provide the best clinical care for us.
Your health data can also be used for purposes beyond direct care including to improve health, care and services through research and planning. This information can be used to help:
Examples and more elaborate case studies concerning each of these types of use are provided below.
Understanding disease... such as why diabetes rates vary between ethnic groups; or finding out about the biological changes involved in Parkinson’s disease.
Individual care... such as making sure your whole care team, from GP to hospital to care home, has up-to-date information to help give the best and safest care; or helping people to manage their condition, from psychosis to asthma, using smart phone apps
Improving diagnosis... such as demonstrating that bowel cancer screening is effective; or finding new ways to identify early warning signs of dementia
Treatment and prevention... such as testing a treatment for lung disease in the real world; or investigating the benefits of giving statins to men who haven’t had a heart attack
Patient safety... such as monitoring the safety of whooping cough vaccination during pregnancy; or checking the safety of hip replacements
Planning national health services... such as finding out how many people have arthritis to inform healthcare planning; or improving the delivery of kidney dialysis services
Evaluating policy... such as comparing cancer survival rates between countries; or showing the impact of a smoking ban on reducing premature births
Your full patient record will only be seen by healthcare professionals who are directly involved in your care or because you provided them with the data.
There are strict controls on how anyone else can access patient information, for purposes beyond your individual care. The purpose must be approved before anyone can use data, and they are only given access to the minimum amount of data necessary. The types of organisations that can use patient data include:
How are decisions made about who can access patient data?
At a national level, some key organisations hold patient data or have responsibility for oversight about the purposes for which it can be used. They work with others to make decisions about how to safeguard data and set the conditions under which it can be accessed.
Do you have ideas about what should health data be used for?