What is health data used for, and by who?
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.
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Types of use beyond direct care
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:
- understand more about disease risks and causes
- support individual care
- improve diagnosis
- develop new treatments and prevent disease
- improve patient safety
- plan national health services
- evaluate healthcare services policy
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.
Case study: follow-up for people discharged from hospitals following a heart attack. By linking three separate sets of data, this research showed that it is common for people to stop taking a recommended anti-clotting drug once they are discharged from hospital after a heart attack. Find out more here!
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
Case study: targeting back pain treatment to those most in need. The STarT Back screening tool uses patient data to help doctors work out the chances of someone with back pain going on to develop a long term disability. By supporting doctors to find those most at risk, treatment can be targeted to where it is most needed, benefitting those with back pain and saving the NHS money. Find out more here!
Improving diagnosis... such as demonstrating that bowel cancer screening is effective; or finding new ways to identify early warning signs of dementia
Case study: using techniques from astronomy to diagnose dementia. The Astrodem study uses techniques developed for studying galaxies to analyse GP data, looking for the early warning signs of dementia. It is hoped that this innovative approach will lead to better tools to help GPs diagnose dementia earlier and offer better support to their patients. Find out more here!
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
Case study: finding treatments for COVID-19. The Randomised Evaluation of COVID-19 THERAPY (RECOVERY) Trial was set up to identify effective treatments that improve outcomes for people in hospital with suspected or confirmed Covid-19. Find out more here!
Patient safety... such as monitoring the safety of whooping cough vaccination during pregnancy; or checking the safety of hip replacements
Case study: can diabetes drugs cause bladder cancer? Patient data is critical to establishing the risks and benefits of treatments. In this case, there is some evidence that a drug prescribed for diabetes, pioglitazone, leads to an increased risk of bladder cancer. At the moment, the nature of this link is unclear, so further research is critical for patients and clinicians alike. Find out more here!
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
Case study: making sure all young people get the best cancer care. This project investigated whether or not there was a difference in the outcome of childhood cancers depending on where someone received their treatment. Find out more here!
Evaluating policy... such as comparing cancer survival rates between countries; or showing the impact of a smoking ban on reducing premature births
Case study: understanding the needs of children with visual impairments or blindness. Studies on national data showed for the first time that the risk of visual impairments for children depends on their ethnicity, birthweight, levels of deprivation and other early life factors. The findings have changed the way the NHS screens for childhood visual impairments and became the international standard for describing the burden of childhood vision impairment across the world. Find out more here!
Who can access patient data?
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:
- National health service providers and commissioners: use data to monitor trends and patterns in hospital activity, to assess how care is provided, and to support local service planning.
- University researchers: use data to understand more about the causes of disease, to develop new ways of diagnosing illness or to identify ways to develop new treatments. Explore our case studies for some examples.
- Charities: use data to evaluate services and identify ways to improve care.
- Companies: use data if they are partnering with the NHS to provide care and research. The NHS can’t do all of the analysis on its own, and companies may have the best expertise and technologies for making sense of large and complex data from hospitals, or for developing new treatments.
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.
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