What is Health Data?

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. It may include our height and weight, whether we smoke, how much we drink, details of any allergies, what aches, pains or infections we’ve got, and what medications we are taking. It may also include the results of blood tests, images from MRI scans, and any procedures we’ve had, together with contact information, date of birth, and next of kin information. Other specialists we see, for example dentists, physiotherapists and psychologists will also create records.

National health systems use this information to help provide the best clinical care for us. But health data can also be reused for purposes beyond direct care including to improve health, care and services through research and planning.

Reusing health data has a huge potential to make better use of information to implement the right changes and improve public health and healthcare. Without reusing it, we would not be able to analyse problems and look for solutions. In this sense, data can directly help us as individuals through the care we receive, but at the same time it can also benefit other individuals.

What's more, none of this would be possible without your data, let alone the data of others. Indeed, individual health data can have a real impact once it is shared and compared with that of others. These collective dimensions of data can sometimes contrast with people's sense of ownership of their data. Although this is a debated topic in the academic community, the fact remains that our health data is highly sensitive and confidential information, which is why it needs to be protected and why citizens need to have rights and opportunities to be involved in some way in its management.

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What are the different types of health data

Information created by health and care professionals

- Electronic health records, which can include results of your blood test analyses, your medical prescriptions, the list of your vaccines.
- National healthcare databases holding items like prescriptions, information about your laboratory tests, and in some countries details about important diseases like cancer.

Information created by patients

- Monitoring illnesses using computer or mobile phone applications.
- Wearable devices such as smartwatches for fitness monitoring and tracking changes relevant to medical conditions.
- How people prevent illness or detect illnesses early, such as screening tests and dietary monitoring.
- Social media posts can be analysed anonymously in aggregate form, for example, to discover how many people are discussing certain side effects of a new treatment.

Wider information that can affect people’s health, such as climate and pollution monitoring data.

What can we expect from the reuse and sharing of health data?

Reusing health data has a huge potential to make better use of information to implement the right changes and improve public health and healthcare:

From the patients' perspective, they would not have to undergo similar procedures or repeat their health histories since their healthcare provider would directly access their health information.

For researchers, reusing health data could also be time-saving and avoid duplicating efforts. Rather than collecting data from research participants, scientists could directly access data already available.

Policy-makers can also implement more-informed and real-time policy, when it is needed (such as during the COVID-19 pandemic).

Without data we would not be able to analyse problems and look for solutions. Using data for improving health, care and services through research and planning is then necessary to preserve and improve common goods such as public health.

Who should benefit from it?

Your data can help you directly, as an individual, to provide you with care, but it can also help other people’s lives by benefiting everyone else. In the following video, you can find out how our data can help you and those you love, as well as everyone else.

How is the value of data created, and by who?

By the way, while all this would not be possible without our data, it would not be possible without the data of others either. Indeed, individual health data has a practical impact only once it is linked and compared with other individuals health data. To understand how valuable health data is created, we need to understand the difference between:

Individual data: A takes treatment X, B takes treatment X etc...

...and aggregate data: In this population, 23% of people take treatment X.

Simply, if small amounts of data from many people are linked up and pooled, researchers and doctors can look for patterns in the data, helping them develop new ways of predicting or diagnosing illness, and identify ways to improve clinical care. This would not be possible by analysing the data of one single person. Indeed, it is only once we have compared our individual health data with others that these patterns can appear. Citizens bring their individual data, like a “raw material”, and healthcare professionals and researchers will then add substantial value to it, by pooling them together, interpreting them and analysing trends. Therefore, the value of health data is the result of a collaborative and multi-staged process among different actors.

How does it affect citizens?

People can sometimes feel that data belongs to them. Our legal framework recognizes that health data is highly sensitive and confidential information about us and our lives, which is why it deserves protection, why citizens have rights, and why we might choose to engage in some way in the management of data about us. However, in addition to the fact that the value of our data has a collective dimension, the European regulatory framework on data protection does not recognize that we individually own our health data. The property of health data has been a hot topic of discussion among the academic community. Above all, conceiving data as a property does not legally imply that you can do whatever you want with it.

Do you have ideas to share about the reuse of health data?