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Q&A: research using patient data

(Image credit: Flickr/jfcherry)

(Image credit: Wikipedia/jfcherry)

There has been a lot of discussion lately about the huge benefits that could come from research using patient data, but what does that actually mean? How is the data used, and what’s in it for the patients? We asked Dr Janet Valentine, Head of Public Health and Ageing at the MRC.

What is research using patient data?

You might have heard it described as e-health, big data, health informatics or health record linkage. They all mean more or less the same thing: research using the information held in NHS health records captured every time we visit a doctor or go to hospital. By using these health records, researchers can help identify more effective treatments, monitor drug safety, assess services provided in the NHS and better understand the causes of diseases.

What types of patient data are used?

GP data, such as routine vaccinations, lifestyle information, and the types of illnesses we have had; hospital stays or A&E visits; prenatal data; information on issued prescriptions; results of scans and screens; and registries of diseases like cancer and heart disease.

Why all the fuss now?

Researchers have been using patient data to make vital discoveries on health for decades — 50 years ago researchers used paper patient records to find the link between smoking and lung cancer. It was incredibly time-consuming work.

But like lots of other aspects of our lives, digital technologies have revolutionised the way that health information is recorded, and now GPs hold their patient data electronically. Using electronic patient records means that research can be done much faster and on a much greater scale, sometimes using millions of patient records to answer research questions.

Research using paper files is time-consuming work (Image credit:Flickr/Doug Waldron)

Research using paper files is time-consuming work (Image credit:Flickr/Doug Waldron)

No other country of the UK’s size (or larger) has a single healthcare system tracking the population’s health from cradle to grave. The wealth of information in the NHS puts the UK at a research advantage. To ensure that UK researchers can make the most of this data, the Government has funded initiatives, such as the Clinical Practice Research Datalink, that are giving researchers access to NHS information in secure, ethical ways.

The MRC has also responded to this opportunity by teaming up with nine other research funders to create four e-health informatics research centres and the Farr Institute of Health Informatics Research which will train researchers to use large and complex sets of patient data and carry out research using patient records on a range of diseases and important public health issues.

How is data kept safe, and will researchers know who I am?

There are strict rules and regulations that researchers must comply with to protect patient information and confidentiality.

Most research using health records uses anonymous data, where identifying information such as names, addresses, dates of birth and NHS numbers have been removed. If identifiable data is needed for a particular piece of research, patients must consent to use their personal data for that specific medical study. In exceptional cases where it’s not possible to get an individual’s consent, a specific committee authorised by the Secretary of State decides whether or not it is within the public’s interest to approve the use of this type of data for that particular study (in England and Wales).

There are strict safeguards controlling who can access patient data for research, and once they have it researchers must use IT systems with the highest standards of privacy and security to ensure that the research is carried out in secure environments.

You can ask your GP to opt you out if you really do not want your data to be used in research. In reality most people are happy to have their information contribute to medical research, provided that the strict criteria to protect patient confidentiality are observed.

Will industry be able to use my data?

Discovery and testing of new medicines relies on backing by the pharmaceutical industry. Recruiting patients to clinical trials and monitoring drug safety involves research using patient health records. Only bona fide industry scientists carrying out medical research will have access to patient data and their research is subject to the same strict regulations as for research in universities.

The Government hopes that by enabling safe access to NHS patient records for research, the UK will be a more attractive place for the pharmaceutical industry to do research, which will create jobs and boost the UK economy.

What have researchers found out using patient data?

Researchers have used patient data in all sorts of important medical studies.

One of the main advantages of using patient data is that researchers can study millions of people’s health in the ‘real world’. This is necessary to study rare diseases that affect small numbers of people, or drug side effects that are serious but don’t occur very often.

Patient data can be used to answer questions about the health service. For instance, the survival rates for common cancers like breast, lung and colon cancers were found to be lower in the UK than in other European countries. Using data from hospital admissions and cancer registries, researchers were able to show the reason for this was because too many people did not see their doctor early enough to benefit from life-saving treatments. As a result of this the Government has funded awareness-raising campaigns to encourage people to see their GP if they believe they may have signs of cancer.

Examples of using patient records for public health research include demonstrating that there is no link between the MMR vaccine and autism, and that the smoking ban in Scotland has led to fewer children being exposed to cigarette smoke in the home.

Patient records can also be used to discover more about causes of disease. Linking different health datasets showed that patients on the common diabetes drug metformin had lower rates of cancer. Researchers are now investigating the anti-cancer properties of the drug.

How can I get involved?

It’s important that people’s opinions about using patient data are heard and help shape the type or research that is done and the regulations that are put in place. For more information contact: www.farrinstitute.org

Further reading

The Association of Medical Research Charities policy statement on patient data

Patient data in medical research – report and video from the British Heart Foundation

NHS patient records to revolutionise medical research in Britain – A feature in The Guardian

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