Improving Mental Health Care

How can we all play a part in data-driven research?

What is mental health data?

The National Health Service (NHS) holds information (also called ‘data’) about us, such as our names, dates of birth, and addresses. Every time we see a doctor or other healthcare professional, new information about us is recorded in our notes – for example, why we are seeing the doctor, what care or treatment is prescribed, and how well it works. Depending on why we are going to the doctor, this may include information about our mental health.

For example, if we go to the doctor because we’re feeling low or anxious, the doctor will record information about the reason we are there. They might ask us a series of questions or ask us to fill in a form about our symptoms. They will use this information to decide what the best therapy or treatment is likely to be. All of this information is recorded in our patient notes. Because it is about our mental health, it is also known as ‘mental health data’.

Why are researchers interested in mental health data?

Researchers often use our de-identified or anonymised mental health data. That means data where identifiable information (like people’s names) are removed, so no one knows whom it is about. Researchers use this data to carry out important research, to learn how to improve the care and services we get. That might mean creating new products and treatments for patients, or finding ways to improve healthcare services.

Real examples of how research with routinely collected data has influenced health care:

NHS now recommends yearly health checks for people with serious mental health challenges

Vaccination may offer new hope in reducing dementia risk in older adults

A new computer programme helps doctors better monitor and support people who have experienced violence

Stopping smoking can improve life expectancy for people with severe mental health challenges

A new app helps reduce risk when prescribing medications to older adults

Examples like these are why we want researchers to use mental health data.

But people are often concerned about how their data, especially mental health data, will be used. They may be even more concerned when commercial companies want to use it. Companies may develop treatments (for example, new medicines almost always come from drug companies), but they also aim to make a profit.

How is mental health data used in research?

There are two main types of health research:

If a research project involves collecting new data from people, the researchers need “informed consent”. People need to understand what they are being asked to volunteer for, and decide whether or not to take part. (There may be special exceptions and safeguards if the condition being researched makes it hard for people to understand what is being asked of them – for example, if the research is about dementia.)

If a research project involves using routinely collected health data (e.g. the information recorded in our patient records when we see a doctor), this usually takes place without people having to give their consent so long as the data can be de-identified or anonymised – so no one can tell whom the data is about.

The NHS pledges:

“to anonymise the information collected during the course of your treatment and use it to support research and improve care for others…”
“where identifiable information has to be used, to give you the chance to object wherever possible…”
“to inform you of research studies in which you may be eligible to participate.”

– You can read the full NHS Constitution for England here >

– You can learn more about your options when it comes to sharing data for research on Understanding Patient Data here >

We want to make sure researchers use mental health data safely and ethically. Researchers also want to do work that the public support. This is why there are controls, checks, and guidelines.

How is mental health data kept safe in research?

There are a number of controls and checks already in place to make sure all our health data is used safely and fairly when it is used for research.

Here are some of them:

All research using people’s data must follow the law. In the UK this includes the Data Protection Act. This law sets out how data must be kept safe. For example, it should be held on secure computers, and only a small number of people should be able to see it.
Research involving health service (NHS) patients must be approved by an NHS Research Ethics Committee. Ethics committees include patients and members of the public. They check that research is safe, has a good purpose and is conducted properly.
Nobody gets better or worse care from the NHS because they say yes or no to research.
If research involves data from lots of people, those people might not be asked for their consent – but in that case, the data must usually be “de-identified” or “anonymised”, so nobody can know who the data came from.

You can find out more about these and other ways our data is kept safe, on Understanding Patient Data >

You can read the full guidelines in this research paper, but here are some of them:

Patients should be told clearly how their mental health data is being used, and what the risks and benefits of the research are.
Mental health data must be kept safe in NHS systems.
Commercial companies should not get the patient notes (free text) written by doctors unless patients have explicitly agreed to share this information.
Patients and the public should have a say in how their mental health data is used.

If you would like get involved in research and are based in the UK, here are some organisations you could look at:

Health Data Research UK Voices (a network of people who want to influence health data research).
People in Research (a digital noticeboard with opportunities to get involved in many kinds of research).
National Institute for Health and Care Research (NIHR) public committees (these groups help decide what research to prioritise and what research projects to fund).
McPin’s Involvement Network (a community of people with lived experience of mental health issues and want to shape research).
MQ’s Lived Experience Research Network (a network of people who have lived experience of mental health challenges and want to shape research).
VoiceIn (a digital platform that makes it easy for people to get involved in all types of research). https://voicein.org/welcome
Shaping Our Lives (a non-profit organisation which specialises in inclusive involvement of people from marginalised communities).
National Survivor User Network (a user-led mental health charity working to amplify the voices of people with lived experience of mental health challenges).

Of course, the other thing you can do is tell everyone about our work to keep patients’ data safe. That way, we can continue to build understanding and trust so that more important mental health research gets done.

But it doesn’t stop there. We can all shape how the NHS and others use mental health data in research.

A great way to do this is to join a Lived Experience Advisory Group that brings together patients, carers and members of the public to influence research. Sometimes this is referred to as “patient and public involvement” or PPI.

Being involved in research could mean helping to:

Identify research priorities and questions: what research should be done?
Include relevant and diverse populations: is the research plan likely to exclude people? How can this be addressed?
Design research studies: how should the research be done?
Look at research findings: do the research results make sense?
Plan how results will be shared: who needs to know about this research and how do we reach them?

This is different from participating in research, when people take part in research as subjects — for example, by providing a blood or saliva sample, completing surveys, giving interviews, or allowing for their data to be used.

When people with lived experience get involved in shaping research, it becomes more relevant, trustworthy and useful.

Source: The Lived Experience Advisory Group (LEAG), made up of patients, carers and members of the public with experience of mental health problems; mental health researchers from DATAMIND; a set of guidelines produced by researchers and the LEAG: https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2026.1760116/full

Date updated: May 2026

This project is funded by the Public Engagement in Data Research Initiative’s (PEDRI) From Standards to Impact Funding Award (HDRUK2025.0517). This work was supported by Health Data Research UK (HDR UK) and UKRI DARE UK – Phase 2 (UKRI Data and Analytics Research Environments UK – Phase 2) programme. HDR UK is an initiative funded by UK Research and Innovation,Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities. The UKRI DARE UK – Phase 2 programme is funded by UKRI Digital Research Infrastructure Programme, delivered jointly by HDR UK and ADR UK,and funded by the UKRI Digital Research Infrastructure Fund.

The project was coordinated by the University of Cambridge.