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Why patient data is vital if we want to transform mental health

Each individual’s experience of mental health is different, and the causes behind certain illnesses can be numerate and complex, including biological, social and environmental factors.

To really understand the role each factor plays towards someone developing a mental health condition, we need to look at large volumes of information relating to people of all backgrounds and life experiences.

Whilst both small scale studies and cohort studies (which gather large amounts of information from a large number of people) are important – alone they are not enough to be able to answer some of the biggest questions facing mental health.

Patient data held by the National Health Service offers a unique opportunity that could help drastically improve mental health research. And you can rest assured - researchers always use patient data in an anonymised format so that your identity is protected and research plans are reviewed by ethics and data access committees, to ensure they are being carried out properly.

We explore 5 ways patient data can help improve mental health

1. To help spot warning signs and intervene early

The earlier people who need support get it, the better. But to do this, we need to understand what factors put someone at risk of developing a mental health condition and what the early warning signs are. 

This can be difficult to assess with traditional research studies alone, particularly for severe conditions where the illness is less common or those affected find it harder to actively take part in research. Using patient data could help.

For example, suicide is a major cause of death in young people, yet gathering enough data on suicide is challenging, and traditional studies have not resulted in conclusive information to identify early warning signs. Analysing patient data allows us to look for risk factors for suicide that we would not otherwise be able to find. This is especially powerful if patient data can be anonymously linked to other data types, such as data held by the department of education. MQ-funded researcher Rina Dutta is hoping she can do exactly that with her work looking to better understand suicide warning signs in children and young people.  

 Knowing what to look out for would allow us to intervene early and save lives.

2. Improving diagnosis

It can take on average 10 years for people with a mental health condition to get the right diagnosis, and many people receive more than one diagnosis before arriving at the correct answer.

This is because there are no definite tests to diagnose mental health conditions, and the types of diagnoses fail to capture the full complexity of mental illness.

By using patient data, researchers can analyse data from large groups of people who received the same diagnosis, and look for ways to speed up getting the correct diagnosis.

They can also find subgroups of people whose symptoms and experience of a certain illness are more similar to each other, which could help us to recognise the complexity of mental illness. For example, there may be different types of depression, but we have not yet found a way to distinguish between them.

Using patient data will not only help people get quicker clarity on their condition and access to the right treatments, it will also lead to a better understanding of mental illness overall.

3. Predicting which treatment will work for whom

People often face years of a ‘trial and error’ approach to treatment before finding something that is right for them.

Traditional studies, like randomised controlled trials, are helpful to test whether one treatment is better than another across groups of people. However, this approach says little about an individual and the datasets are often too small to be able to accurately assess the best choice for a specific person.

Using patient data, researchers can analyse data from much larger groups of people who received different treatments. Taking into account as many individual patient characteristics as possible - such as age, gender, physical health, and symptoms – researchers can start to understand which treatment is better for whom.

MQ-funded researchers Rob DeRubeis and Zach Cohen have organised a large collaborative project where teams compete for the best way to guide selection into different psychological treatments, and Dr Miranda Wolpert is using this approach in her work to improve treatments for young people experiencing mental illness. You can find out more about her work here.  

The insights gathered from patient data can then be used to help clinicians choose a treatment for each individual patient that is most likely to help. 

4. Reducing the mortality gap – mental illness & physical health

It’s a sad fact that people with mental health problems have a lower life expectancy than the general population. But why is this the case? 

Looking at patient data can help researchers to identify what causes this mortality gap, and discover ways to address it. Perhaps surprisingly, research has found that physical health problems such as heart disease play a much bigger role in this than suicide

MQ-funded researcher James Walters is linking the largest genetic database on people with schizophrenia to routinely collected patient data to find out whether the same genes that put someone at risk of schizophrenia also put them at risk of physical health conditions.

These insights could be used to advise people on taking preventative measures, alert health professionals to an increased risk, and develop new treatments and support.

5. Understanding trends and monitoring progress for people with mental health conditions

It is currently very difficult to say how many people are affected by specific mental health conditions across the UK, what treatments they are receiving, and whether they are getting the right support. Estimates are based on representative surveys that provide a limited snapshot every four years. Patient data gives an overview of what is actually happening in the real world and could help researchers to establish these larger scale ‘trends’ in mental health, to improve our understanding of mental illness and to identify opportunities for improvements. 

Using this approach, researcher Ann-John was able to show that the number of children and young people receiving medication for depression or anxiety by their GPs is increasingin the UK. She also found that in many cases the treatment offered was not the best one as recommended by the National Institute for Clinical Excellence – thus identifying a clear area for improvement .

MQ’s Adolescent Data Platform will go some way to ensure researchers have secure and efficient access to anonymised patient data to help us improve our understanding of mental illness and improve the lives of people affected.

From May 2018 NHS patients in England have a new option to restrict the use of their data in research. But for high quality research it’s vital that anyone accessing the National Health Service continues to allow their data to be stored and used in research.

Find out more about how data saves lives, and about your new options and how patient data is used and kept secure.

This blog was developed using resources from the Milto Goulandris Mental Health Intelligence Library.

Last updated: 22 May 2018

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