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Glossary

MENTAL HEALTH

Glossary

Welcome to the MQ's Mental Health Research Glossary. The aim of this glossary is to be a reference point, to help inform and assist use of appropriate and helpful language regarding mental health and particularly language involved in mental health research. Authored by people with lived experience of mental illness, mental health science researchers and those who work directly in the sector, this glossary offers clear definitions and explanations of key concepts, phrases and terms related to mental health, mental wellness, mental health conditions and mental illness.

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Term

Definition
Source
An abstract is a concise summary of a research paper or entire thesis. It is an original work, not an excerpted passage. An abstract must be fully self-contained and make sense by itself, without further reference to outside sources or to the actual paper.
MQ Base Glossary  
These are drugs that bind to the target receptor and they change receptor activity to produce a response. They mimic natural molecules in your body to trigger specific reactions in cells.

GALENOS Glossary

An algorithm is like a recipe or set of rules that tells a computer how to work with the data. It helps the computer process and understand the information by following a series of steps. Algorithms can do things like organising data, searching for specific pieces of information, or making calculations.
DATAMIND glossary  
Occurs when there is a systematic difference in how participants are assigned to the intervention and comparison group in a clinical trial. Allocation bias may result if investigators know or predict which intervention the next eligible participant is supposed to receive. To prevent this bias, the sequence of assigning participants should be concealed so no-one can predict or influence who will be put into a group.
MQ Base Glossary  
A method of studying a disease, illness or mental health disorder using animals. There are many ways you can mimic symptoms of disorders in animals, but they do not always mimic what you expect the disease to look like in humans.

GALENOS Glossary

Anonymisation makes data anonymous by removing anything that could identify people. Think about a database with blood test results, diagnoses, and ages, but no personal details. It's like making the data a secret puzzle - no one knows who it's about. This keeps the data private so no one can recognise individuals.
Anonymisation happens by changing or taking out personal information, or by using special software to hide private details. Yet, researchers can still use this data for answers without knowing who's who.This helps researchers learn from data while keeping it private.
DATAMIND glossary  
Anonymised results are those that don't reveal any personal details and can be shared publicly, like in scientific journals. For example, a statement like "We studied 1000 people with depression, and 42% had tried cognitive-behavioural therapy" is considered anonymised because it doesn't provide any specific information that could identify the individuals involved.
DATAMIND glossary  
Antagonists are drugs which act as helpful stoppers in research. They block things to see how something would normally function. Researchers might use an antagonist to block a certain receptor and see what happens in the cell. If a certain function stops working, it helps them understand what that receptor normally does.
MQ Base Glossary  
Anxiety is a constant feeling of worry or fear that significantly impairs people's daily functioning. Although worry or fear is a normal response to many stressful life situations (like preparing for an exam), people with anxiety disorders find it difficult to control these feelings.
When diagnosed, anxiety disorders include: generalised anxiety disorder (GAD), panic disorder, phobias, social anxiety disorder, obsessive-compulsive disorder (OCD) and post-traumatic stress disorder (PTSD).
MQ Base Glossary  
All Party Parliamentary Group
MQ Base Glossary
Approach-avoidance training (AAT) is a type of cognitive bias modification (CBM) technique used to influence how we automatically respond to certain stimuli. It specifically targets our tendencies to either approach desirable things or avoid undesirable ones. A breakdown of AAT:

  • Target: Automatic motivational responses towards stimuli. These responses can be conscious (like craving a donut) or unconscious (like pulling away from a spider).
  • Method: Computerised tasks where participants repeatedly associate approaching responses with desired stimuli and avoidance responses with undesired stimuli. This "training" aims to weaken unwanted impulses.
  • Goal: Weaken unhealthy impulses and strengthen desired responses to specific cues.

AAT is commonly delivered through computer programs where participants see images or words on a screen. Their task might be to:

  • Move a joystick towards positive images (like healthy food) and away from negative ones (like junk food).
  • Classify words as positive or negative, with faster responses required for the desired category.

Applications of AAT:

  • Addiction: Reduce cravings for substances like alcohol or drugs by weakening approach tendencies towards them.
  • Eating Disorders: Strengthen approach responses to healthy foods and weaken them for unhealthy options.
  • Anxiety Disorders: Reduce automatic avoidance reactions to social situations or phobias.
MQ Base Glossary  
Artificial Intelligence (AI) is a branch of science that aims to create technology that may perform tasks and make decisions in a way that resembles human intelligence. AI has advanced from rule-based systems to complex algorithms like deep learning. However, it lacks common sense, true understanding, and emotions, unlike human intelligence. Exaggerated expectations have led to misconceptions about AI's capabilities.
MQ Base Glossary  
Attentional bias is a tendency to interpret neutral information a certain way. In clinical contexts this means interpreting neutral information in a negative way.

GALENOS Glossary

Occurs when there are systematic differences between the trial groups because participants have dropped out or have been excluded during follow-up. Losses to follow-up can be prevented by ensuring good communication between study staff and participants, accessibility to clinics, incentives to continue, and ensuring that the study is of relevance to the participants. Another way of preventing this bias is to analyse the results by ​intention to treat - including all the patients in the final analysis, including the ones who have dropped out. If data are missing, this should always be reported, together with any methods used to compensate for it.
MQ Base Glossary
Best practice is a standard or set of guidelines that is known to produce good outcomes if followed. They may be based on different levels of research evidence and/ or collective experience.
DATAMIND Glossary
Big Data means working with large amounts of information. The definition of "big" depends on the context. It can refer to data from a huge number of people, like health records from millions of individuals. It can also refer to data that requires a lot of storage space, such as DNA sequences, MRI scan images, or activity data from mobile phones. The term "big data" became popular in the early 2000s and has been associated with over 25,000 publications in the life sciences as of March 2023.
DATAMIND Glossary
Black and Minority Ethnic is a general term for people with ethnic minority backgrounds. There has been debate about whether this term is useful or not. As a result there has been a move away from using it, including a directive from central government Equality Hub. Terms that are currently in use include ethnic minority, minority ethnic, and minoritised ethnic.
DATAMIND Glossary
Body Mass Index is a measure which takes account of height and weight and charts ‘a normal range’ on a graph. It is not very sophisticated but easy to measure.
DATAMIND Glossary
How the brain affects and is affected by the rest of the body (e.g. digestion, heart health)
MQ Base Glossary
People’s death and loss of health due to anxiety and depression.
MQ Base Glossary
Camden and Islington NHS Foundation Trust (a secondary care, mental health Trust in North London)
DATAMIND glossary
In the NHS, the Caldicott Guardian is a senior professional who safeguards patient confidentiality and privacy. They are responsible for protecting patient information within NHS organisations, including how it is used, following the guidelines led by Dame Fiona Caldicott, the first National Data Guardian. Both the Caldicott Guardian and the National Data Guardian protect patient information. The National Data Guardian oversees data use across the entire UK health sector to ensure proper use of patient info. The Caldicott Guardian focuses on data protection within individual healthcare groups.
DATAMIND glossary
Common Data Model
MQ Base Glossary
A large survey that happens every 10 years in the UK. It asks people about things like their age, gender, and background. This information, collected from all over the country, helps with things like local service planning and making important decisions. The data is made anonymous before being used to understand the population better.
DATAMIND glossary
The investigator (researcher) with overall responsibility for a research study, and the person who seeks ethical approvals.
DATAMIND glossary
Refers to individuals in the age range from infancy to young adulthood. Usually refers to those aged from 10 - 24 years.
DATAMIND glossary
person’s circadian rhythm, understood as a person’s 24-hour sleep / wake cycle
MQ Base Glossary
A class in an ontology is a grouping or category of similar entities. It's like a folder or a label that you use to organise things that share common characteristics or attributes. For example, in an ontology about animals, you might have a class called "Mammals" which includes entities like dogs, cats, and humans. Each class defines a set of properties or attributes that its members share. So, in simpler terms, you can think of entities as the things you're talking about, and classes as the categories or groups those things belong to within the ontology.

GALENOS Glossary

A network that helps coordinate and support research studies in the National Health Service. The CRN’s primary goal is to enhance the quality and quantity of clinical research conducted across the NHS by providing the infrastructure, expertise, and resources needed to carry out research studies effectively. The CRN helps doctors and scientists work together on research projects. They find patients who want to be part of these projects and make sure the research is done correctly. By gathering this information, they can learn more about how different treatments and medicines work. They can find out what works best for patients and help doctors make better decisions about how to treat people. This teamwork and data collection also lead to new ideas for treatments and medicines in the future.
DATAMIND glossary
A trial refers to a research study conducted to test a new treatment, like a medicine or talking therapy. When it comes to testing medicines, clinical trials are known as Clinical Trials of Investigational Medicinal Products (CTIMPs), and they have additional special rules and regulations that need to be followed. These rules ensure the safety and effectiveness of the new treatment being tested before it can be made available to the general public and the safety of the people participating in the trials.
DATAMIND glossary
Information collected during research studies that evaluate the safety and effectiveness of medical treatments or interventions.
DATAMIND glossary
A person's information about their health or day-to-day health care. Healthcare data is the information collected about a person's health and medical care. This information is collected as people see healthcare professionals, have tests and treatments as part of their care. It is stored in electronic health records (EHRs) used by the NHS. There are different types of healthcare data: 1. Simple Data: This data is organised in a table format and includes basic information like the patient's name, date of birth, gender, NHS number, and contact details. It also includes details about the patient's health, such as the reason for their visit, any illnesses or conditions they have, and the treatments or care they received. This data is entered by healthcare professionals or automatically generated, like appointment dates, diagnosis codes, test results, and prescribed medications. Patients may also provide additional information through questionnaires or surveys. 2. Free-Text Data: This refers to unstructured text information, like notes or letters, that healthcare professionals write or patients provide. It doesn't follow a specific format and may contain detailed descriptions or additional information about the patient's health. 3. Images: Healthcare data can also include images, such as X-rays, CT scans, or MRI scans. These images help healthcare professionals see and analyse specific body parts to aid in diagnosis and treatment planning. 4. Complex Data: This includes more advanced types of data, like genetic information obtained from gene sequences in DNA. Currently, genetic sequencing is not widely used in the NHS, but it may become more common in the future. This type of data can provide insights into a person's genetic makeup and potential health risks as well as form the basis of personalised treatments All of this healthcare data is important for healthcare professionals to understand a patient's health history, make accurate diagnoses, and provide appropriate care and treatment. Researchers often use this data after it has been anonymised, to answer questions to improve people’s care.
DATAMIND glossary
Whether a treatment's effect is meaningful in real life, beyond statistical measures. Clinical significance refers to whether a treatment makes a noticeable difference to a person's health and wellbeing and can be used as a check of how useful a treatment is.

GALENOS Glossary

A member of staff in a health care service (such as a nurse, doctor, or psychologist) who delivers care to patients/service users.
DATAMIND glossary
Cloud computing means another company handles things like computers, storage, software, and more, over the internet. Big names like Amazon, Google, and Microsoft do this. They store your data and let you analyse it using their powerful machines (lots of computer processors and memory). The provider typically looks after things like physical security (preventing break-ins), electronic security (only permitting access by authorised users and preventing hacking over the network), and ‘resilience ‘(e.g. keeping regular backups, having devices for when one breaks, having batteries or generators for power cuts, and maybe having other data centres in case of disasters). Many cloud providers allow the customer to choose the physical location of the data centre (e.g. Cardiff versus California), which may be important for compliance with relevant data protection laws. Cloud computing is distinguished from computing “on premises”, i.e. physical computers that an organisation (such as an NHS Trust) owns and looks after itself.
DATAMIND glossary
Cloud storage is like a virtual locker on the internet where you can keep your files, photos, and documents. Instead of storing everything on your device, you upload them to this online space. Think of streaming a movie online instead of downloading it, sharing photos on social media, storing files in Google Drive or iCloud, sending emails through services like Gmail, and collaborating on documents in real time. All these activities involve using cloud storage, where you access and manage content over the internet, without needing to keep everything on your device.
DATAMIND glossary
Core mental health dataset
MQ Base Glossary
Content management System. It is a software application that allows users to create, manage, and publish digital content on the web easily.
MQ Base Glossary
A collection of specific codes that are used in healthcare to represent different things, such as medical diagnoses, treatments, or procedures. These codes are standardised and help healthcare professionals classify and identify specific information in a consistent and uniform manner. Code lists make it easier to communicate and exchange information accurately within the healthcare field.
DATAMIND glossary
Cognitive bias modification (CBM) is a relatively new approach in psychology that aims to directly change our inherent thinking shortcuts, known as cognitive biases. These biases can be helpful sometimes, like prioritising threats to stay safe. But often, they lead to unhelpful thinking patterns, especially for people with anxiety or depression. CBM tries to address this by using computer-based training exercises. A breakdown of CBM:

  • Target: Cognitive biases, such as negativity bias (focusing on the bad) or attention bias towards threats.
  • Method: Repeated practice on computerised tasks. Imagine a game where you identify positive words faster than negative ones, training your brain to attend to the positive.
  • Goal: Encourage a healthier thinking style by modifying information processing.

There are two main types of CBM tasks:

  • CBM for Attention (CBM-A): Trains attention to focus away from negative stimuli and towards positive or neutral ones.
  • CBM for Interpretation (CBM-I): Helps reinterpret ambiguous situations in a more positive light, promoting flexible thinking.
DATAMIND glossary
Cognitive impairment includes attention, memory and focus
MQ Base Glossary
Approaches aimed at improving mental health based on programmes implemented at the local level (e.g. with families, schools, digital groups, neighborhoods, etc.).
MQ Base Glossary
The Confidential Advisory Group (CAG) is a multi-disciplinary group within the NHS Health Research Authority. It plays a role in England and Wales when researchers want access to confidential patient information that's not fully anonymised and consent isn't possible. When this happens approval from the CAG is required. The group advises and operates on behalf of the Secretary of State for Health and Social Care.
DATAMIND Glossary
A Confounder is an extraneous variable whose presence affects the variables being studied so that the results do not reflect the actual relationship between the variables under study. Common examples of such variables are severity of pre-existing disease, healthcare use, weight of the participants, and socio-economic status.
MQ Base Glossary
Consequentialism is an ethical theory that judges whether or not something is right by what its consequences are.
MQ Base Glossary
Strategies relevant to, and suitable for use in, a specific setting.
MQ Base Glossary
An approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge. The assumption is that those affected by research are best placed to design and deliver it and have skills and knowledge of equal importance (NIHR).

GALENOS Glossary

The main things a project (like DATAMIND) focuses on to be successful. It's the key areas of expertise and knowledge that the project specialises in to achieve its goals.
DATAMIND Glossary
A tool used to collect information about mental health during physical health clinical trials. It helps researchers gather important data specifically related to mental health and well-being alongside physical health information. This tool is part of the work done by DATAMIND.
DATAMIND Glossary
Clinical Research Network
MQ Base Glossary
Cardio vascular disease
MQ Base Glossary
Data means information. It can be numbers, text, images, videos, sound recordings, or any other type of information that can be collected, stored and analysed by computers or humans. Data is a very broad term. In health research we usually mean information (data) about a person which is stored electronically (online).
DATAMIND Glossary
A data controller is a person or organisation who decides how personal data, which is information about identifiable individuals, is used or handled. Examples of data controllers include NHS organisations like Trusts and GP surgeries. On the other hand, a data processor is a person or organisation that processes personal data on behalf of the data controller. In the UK, all organisations that handle personal data, with very few exceptions, must be registered with the ICO (Information Commissioner's Office), and this registration information is publicly available. Data controllers have a legal responsibility and can be held accountable if there's a problem with how personal data is handled. This includes breaches or misuse of data. They must take measures to prevent issues, promptly report breaches to the relevant authorities, and can face fines if they don't meet their obligations.
DATAMIND Glossary
This is like being a caretaker for data, similar to a museum curator. It is basically looking after data for other people to work with it.
This can involve putting data together, quality control (finding and removing errors or invalid data), describing it well so that other researchers can understand it (providing metadata or a catalogue), or mapping it to a standard “vocabulary” (e.g. if two databases record problems using different coding systems, can those be mapped to each other?). The overall goal is to maintain and manage the data for easy use by others.
DATAMIND Glossary
The process of identifying and accessing relevant data sources for research or analysis.
DATAMIND Glossary
Policies, procedures, and regulations that govern the collection, storage, access, and use of data to ensure privacy, security, and ethical considerations are addressed.
DATAMIND Glossary
The ability to understand, analyse, interpret, and critically evaluate data and data related studies.
DATAMIND Glossary
Data mining is like searching for patterns in data, especially when there's a lot of it. Instead of starting with a question (or ‘hypothesis testing’, you explore the data to find interesting things you didn't expect. Sometimes, this involves using machine learning techniques. However, one risk of data mining is of finding patterns that seem important but are actually just random or because your data is flawed. So, it's important to be careful and make sure the patterns you discover are truly meaningful.
DATAMIND Glossary
Whereas a data controller decides what is done with data, data processors do what they’re told (and only what they’re told) by the controller, with the controller’s data. For example, it would be typical that an NHS Trust pays a computing company to run its e-mail service or to run an EHR system. In this situation, the NHS Trust is likely to be the data controller, and the computing company the data processor. The data processor isn’t allowed to use the controller’s data for other purposes, e.g. sending out advertising to individuals.
DATAMIND Glossary
The Data Protection Act 2018 is the UK’s principal law governing the handling of data relating to identifiable living people (“personal data”). It implemented UK-specific aspects of the GDPR and superseded previous UK legislation. The Act primarily guides organisations in handling data, but it also grants individuals rights to protect their own data.
DATAMIND Glossary
Before your personal information is used or processed, the possible risks to you as the ‘data subject’ need to be assessed. This assessment is your Data Protection Impact Assessment. It includes the measures planned to manage those risks and protect your personal information. It's like a safety check to make sure your information stays safe and secure. It’s also called a privacy impact assessment.
DATAMIND Glossary
Where data controllers/processors are public bodies or organisations handling personal data on a large scale, they must (under the GDPR) appoint a data protection officer to advise them on data protection and monitor compliance. Data protection officers are listed on the public register held by the Information Commissioner's Office (ICO).
DATAMIND Glossary
Data science is a field of research that focuses on learning from data. It involves different areas of study, like storing, organising and processing data (data management, computer science), and analysing data to find useful patterns (computer science, statistics). It also requires thinking about the specific problem (e.g. a particular disease or condition of interest); after all, there is no science without data. All these different parts mean data science is often an interdisciplinary field with lots of people from different scientific backgrounds working together (like clinicians and computer scientists). Data science helps us gain knowledge and insights from the data we have.
DATAMIND Glossary
These are different ways of using technology and methods to look at data and find useful information from it. Data scientists use special techniques to analyse and understand data, so they can solve problems or find answers to questions. They use tools and methods to make sense of the data and discover important insights that can help with decision-making or problem-solving.
DATAMIND Glossary
There are rules, regulations, standards and guidelines for keeping data secure. In the NHS (National Health Service), they use a tool called the Data Security and Protection Toolkit to evaluate and improve data security. Private companies and data centres also use similar but not exactly the same ones used in the NHS often based on international standards.
DATAMIND Glossary
A person whose personal data is being held by a data controller.
DATAMIND Glossary
When a person or organisation that has control over data wants to share that data with another organisation, they make an agreement or contract. This agreement outlines the terms and conditions for how the data can be transferred and used by the other organisation. The agreement ensures that both parties understand and agree on how the data should be handled. So a Data Transfer Agreement is an agreement or contract between a data controller and another organisation (such as a data processor), governing the transfer of data.
DATAMIND Glossary
People or organisations who access and use collected data for research or other purposes.
DATAMIND Glossary
Making the best use of available data to learn important things, make smart choices, and take the right actions based on the information gathered.
DATAMIND Glossary
Databases mainly consist of tables that hold organised information. These tables often connect with each other, forming "relationships" between records. These connections are typical in "relational" databases, where one record refers to another, even in different tables. Each table is like a grid with rows and columns, focusing on something of interest, such as clinic referrals. Columns represent simple details about the table, like "referral number" or "referral date." Each row, known as a "record," corresponds to a single instance, like a unique referral. In the grid, where rows and columns meet, you find a "value" (also called a "field" or "cell"), which holds a single piece of information, like "2023-01-01." Sometimes, values can be missing, appearing as blank or "null."
DATAMIND Glossary
De-identified data is where personal details (those which can directly identify a person such as their name and address) have been removed. This is done by replacing or removing these direct identifiers. Where they are replaced by a research identifier (ID) or “pseudonym” this is called pseudonymisation. Both structured data and text can be de-identified. The aim is to ensure data used for analysis or research does not reveal who people are.
DATAMIND Glossary
During a depressive episode, the person experiences depressed mood (feeling sad, irritable, empty) or a loss of pleasure or interest in activities, for most of the day, nearly every day, for at least two weeks. Several other symptoms are also present, which may include poor concentration, feelings of excessive guilt or low self-worth, hopelessness about the future, thoughts about dying or suicide, disrupted sleep, changes in appetite or weight, and feeling especially tired or low in energy. "In some cultural contexts, some people may express their mood changes more readily in the form of bodily symptoms (e.g. pain, fatigue, weakness). Yet, these physical symptoms are not due to another medical condition. During a depressive episode, the person experiences significant difficulty in personal, family, social, educational, occupational, and/or other important areas of functioning. A depressive episode can be categorised as mild, moderate, or severe depending on the number and severity of symptoms, as well as the impact on the individual’s functioning. This is distinct from feelings of sadness, stress or fear that anyone can experience from time to time in their lives. More info from the WHO is here. "
DATAMIND Glossary

Detection (of anxiety, depression, etc.)

The act of observing or noticing an illness or condition (e.g. anxiety, depression.)
MQ Base Glossary
Occurs when the ​outcome measurements between groups of participants in RCTs are systematically different because the people reporting or taking them (who can be participants, researchers or healthcare providers) are influenced by their differing individual views on the effectiveness of the treatments. This bias can be prevented by blinding or masking outcome assessors.
MQ Base Glossary

Diagnosis (of anxiety, depression, etc.)

The act of formally and medically identifying an illness or condition (e.g. anxiety, depression.)
MQ Base Glossary
Systematic reviews that address the question of how good diagnostic tests are in identifying a particular disease are called Diagnostic test accuracy reviews.
MQ Base Glossary
Dichotomous (outcome or variable) means ‘having only two possible values’ or outcomes
MQ Base Glossary
A context, or a “place”, that is enabled by technology and digital devices, often transmitted over the Internet, or other digital means (e.g. mobile phone network). This can include websites, mobile applications, social media, audio and video content, and other web-based resources.
MQ Base Glossary
Clinical studies that use digital technologies to improve the way trials are conducted. These technologies can include apps, wearable devices, and online platforms that make it easier to recruit participants, collect data, and deliver interventions. By incorporating digital tools, trials become more efficient and accessible, leading to better healthcare outcomes.
MQ Base Glossary
Groups of people facing unique setbacks and challenges in life, as compared to other groups. These groups can be based in specific geographies, possess specific social and/or economic statuses, and/or belong to specific ethnic or racial groups.
MQ Base Glossary

GALENOS Glossary

DSM is the standard classification of mental disorders used by mental health professionals in the US and many other countries.
MQ Base Glossary
Experiential Advisors (see also LEE)
MQ Base Glossary
Experiential Advisors Candidates for the ‘GLEAB’ who have expressed interest in, and given consent to be contacted about, future ‘GALENOS’ activities.
MQ Base Glossary
Equity audit tool
MQ Base Glossary
Early career researchers. People who are in the early stages of their research careers, typically within a few years of completing their doctoral degree or equivalent.
MQ Base Glossary
E-cohorts are well defined groups created based on electronic data which enable analysis and comparison.
DATAMIND glossary
The effect size tells you how big an effect the intervention has on the outcome. E.g. a drug may improve symptoms of schizophrenia, but the effect size tells you how much the symptoms improve. Effect sizes are usually reported as either small, medium or large and what this means in reality depends on the study.

GALENOS Glossary

A person’s health records that are held digitally on a computer (as opposed to on paper). Also known as an electronic patient record (EPR).
DATAMIND glossary
An entity in an ontology is anything that exists and can be described or identified. It could be a physical object, like a book or a person, or it could be an abstract concept, like a process or a relationship. Essentially, an entity is anything you can talk about or think about within a certain domain.

GALENOS Glossary

Research in which data about people is analysed. Although this might be participatory research (the researchers meet people and collect data from them specifically for the study), this kind of research often uses routinely collected data from large numbers of people (i.e. from contacts with GPs). Using information from a very large number of people often makes the research better able to find answers. However, conclusions from routinely collected data are tentative, because “correlation does not imply causation”. If event A is associated (correlated) with event B, is that because A causes B, because B causes A, because X causes both A and B, or was it a chance finding? Strong conclusions may require randomised controlled trials.
DATAMIND glossary
Relating to the theory of knowledge, especially with regard to its methods, validity, and scope, and the distinction between justified belief and opinion.
MQ Base Glossary
A checklist or tool that helps make sure things are fair and equal for everyone. It looks at systems, processes, or research studies to see if there are any differences or imbalances between different groups. It helps identify and address any unfairness or inequalities, making sure everyone is treated fairly and included.
DATAMIND glossary
The aim of these assessments is to guarantee equal opportunities for everyone to take part in the trials. They examine the fairness and inclusivity of clinical trials, with a focus on participant representation (including underserved groups and all genders) and access. They are not universally mandatory for all trials. Whether these assessments are obligatory depends on the specific regulations in place. It's recommended to refer to the relevant guidelines to determine if these assessments are required for the trials being conducted.
DATAMIND glossary
Ethical approvals are like getting the green light from a group of experts who make sure that research is done in a proper and respectful way. They ensure that participants' rights are protected and everything is conducted responsibly. It's like having a permission slip before starting the research to ensure everything is fair and safe.
DATAMIND glossary
The 2016 GDPR set out the EU framework for the handling of data relating to identifiable living people. Among many other things, it sets out a variety of legal bases for using personal data, such as “the data subject has given consent”, “a task... in the public interest”, or for “scientific... research”. The UK DPA was framed in its terms and set out UK-specific aspects. When the UK left the EU in 2020, the GDPR remained in UK law as the “frozen GDPR” or “UK GDPR”.
DATAMIND glossary
'Evidence synthesis' refers to the process of bringing together information from a range of sources and disciplines to inform debates and decisions on specific issues. Decision-making and public debate are best served if policymakers have access to the best current evidence on an issue.
MQ Base Glossary
A concept or strategy that is derived from or informed by data obtained and analysed through research methods (e.g. clinical trial).
MQ Base Glossary
Within GALENOS we deliberately use the term ‘Experiential Advisor’ when talking about advisors with lived experience of mental health issues.

GALENOS Glossary

External validity is the extent to which the results of an RCT are relevant and applicable to clinical practice or the general public for whom a treatment is intended: in other words, how much the results can be generalised.
MQ Base Glossary
An extraction sheet, also known as a data extraction form or template, is a structured tool used in systematic reviews to systematically collect and record information from each included study. It typically includes key details such as study characteristics (e.g., study design, sample size), participant demographics, intervention details, outcomes measured, and results. The extraction sheet helps ensure consistency in data collection across studies and allows researchers to efficiently extract relevant information for analysis. Think of it as a checklist or form that helps researchers organise and document the essential details from each study in a systematic and standardised manner.

GALENOS Glossary

  • Findable: Making mental health datasets easy to find and locate.
  • Accessible: Ensuring that researchers and others can easily access and obtain mental health data.
  • Interoperable: Allowing different mental health datasets to work together and be combined for analysis.
  • Reusable: Allowing mental health data to be used multiple times for different research purposes.
DATAMIND glossary
Federated data analysis describes an analysis that is performed on multiple (often geographically) separated datasets.
MQ Base Glossary
When multiple databases from different places work together as if they were one big database, it's called a federated database. For example, researchers used the TriNetX international federated database to study how COVID-19 affected mental health. The researchers ask a question electronically, which the gets split into multiple queries. These queries are sent securely over the internet to all the different databases. (e.g. “how many people in your database had COVID-19, and of them, how many developed depression in the next three months?”).
DATAMIND glossary
Trusted Research Environments (TREs) across the UK have adopted the Five Safes framework to guide their data security processes. Created by the UK Data Service in the UK, the Five Safes framework is a set of principles designed to ensure safe and secure access to data for researchers. The Five Safes framework, helps researchers use private data carefully while keeping people's information safe. People around the world now see it as a good way to handle data responsibly. Here's a simplified explanation of each of the five safes:

  • Safe data: Data is made safe by removing any information that could identify individuals. This protects people's privacy when researchers access the data.
  • Safe projects: Projects involving data undergo a review process, often by the data owners. They determine whether the project is in the public interest before granting approval. This ensures that data is used for legitimate and beneficial purposes.
  • Safe people: Researchers accessing the data are trained and approved to handle it safely. They are bound by contracts and professional obligations of confidentiality, ensuring that they keep the data secure and private. National training programs, such as the Accredited Researcher training provided by the Office for National Statistics, ensure researchers have the necessary skills and researchers need to keep their certificates up to date.
  • Safe place or setting: This environment provides a secure and controlled space where the data can be accessed and analysed without the risk of unauthorised access or breaches.
  • Safe outputs: When publishing research results, precautions are taken to ensure that the information is truly anonymous. Sometimes results are reviewed to ensure this has happened before the researcher can take them. This prevents any potential re-identification of individuals from the published findings, further protecting their privacy.

Overall, the Five Safes framework promotes responsible data use, protecting privacy, and ensuring that research projects are conducted in a secure and ethical manner.

DATAMIND glossary
A forest plot (also known as a blobbogram) is a graphical representation of the findings from multiple studies that address the same research question. It is typically used in meta-analyses, which are statistical methods that combine the results of multiple studies to provide a more comprehensive understanding of the overall effect of a treatment, intervention, or exposure.

MQ Base Glossary

Humans find it easier to write in sentences or notes than to enter information into databases in a structured format often using codes for diagnoses like depression. Patients write to clinicians and provide comments to health services. Clinicians write letters to each other and make notes in health records. This means that EHR systems often contain large quantities of text like “I met Mr Smith today. He is recently divorced. He has depression.” This is known as “free” text because the person is free to write anything, without electronic coding constraints. Free text often contains important information. It is easy for humans to understand, but much more challenging to use for research. Unlike structured data, which can be easily categorised and analysed, text requires more effort and advanced techniques to extract meaningful information. Research projects using EHRs might ignore free text and just use structured data such as a code for ‘depression’; or employ a human expert to read free text (typically after de-identification); or use more advanced technologies like natural language processing.

MQ Base Glossary

Global Alliance for Living Evidence on aNxiety, depressiOn and pSychosis – a new living evidence resource of early phase research for research prioritisation in mental health.

GALENOS Glossary

Research that investigates individual genes and their roles in inheritance and disease whereas genomics aims at the collective characterisation and quantification of all an organism's genes, their interrelations and influence on the organism.
DATAMIND glossary
The genome is the entire collection of DNA, which is like a genetic blueprint, found in an organism. In humans, nearly all cells carry a full copy of the genome. This genetic information holds all the details necessary for a person's growth, development, and the traits they inherit. It's like a comprehensive set of instructions that guide how a person is built and how their body functions.
DATAMIND glossary
Research that investigates the molecular biology concerned with the structure, function, evolution, and mapping of genomes. A genome is an organism's complete set of DNA, including all of its genes as well as its hierarchical, three-dimensional structural. It involves studying the DNA and genetic makeup to understand how genes influence traits, diseases, and other characteristics.
DATAMIND glossary
Genotyping means studying a person's DNA to find specific differences in their genes that can affect traits or health conditions. It helps scientists and doctors learn more about a person's genetic characteristics and potential risks for certain diseases.
DATAMIND glossary
Global Experiential Advisory Board – a group of lived experience people working on the GALENOS project.

GALENOS Glossary

The actions people take to improve their health and wellbeing.
MQ Base Glossary
Higher Education Institutions
MQ Base Glossary
Hospital Episode Statistics (HES) is a dataset that contains information about hospital care in England. There are similar datasets in devolved nations e.g. Patient Episode Dataset, Wales PEDW. HES provides details about various aspects of hospital care, such as patient admissions, procedures, diagnoses, and treatments. It helps researchers and healthcare professionals understand patterns, trends, and outcomes related to hospital services in the UK. By linking HES with CPRD, which is a larger and more comprehensive dataset, researchers can gain a more complete picture of patients' healthcare journeys such as from general practice to hospital admission. This linkage allows them to explore connections between hospital care and other healthcare data, enabling deeper insights into patient experiences, treatment effectiveness, and health outcomes.
DATAMIND glossary
The fact of consisting of parts or things that are very different from each other. The quality of being composed of diverse or dissimilar elements. Not comparable in kind. Hetero: means 'other' or 'different' Geneity: comes from the word 'genus', which relates to origin or kind. In data analysis: A heterogeneous dataset would have elements with different characteristics and values.
MQ Base Glossary
A country with a high total income in proportion to its population, as defined by the World Bank (https://datatopics.worldbank.org/world-development-indicators/the-world-by-income-and-region.html)
MQ Base Glossary
Hyperglycaemia means high blood sugar, or too much sugar circulating in your bloodstream.
MQ Base Glossary
Identifiable data is information that directly tells you who someone is. It includes things like their name, date of birth, address, NHS number, and phone number. These are direct identifiers. For example, if you have a person's name, birthdate, and NHS number, you can easily identify them. This kind of data is private and needs to be handled carefully to protect people's personal information. A fictional example: “John Smith, male, DOB 3 Jan 1948, NHS# 1234567890, diagnoses of depression and heart failure” where “John Smith, male, DOB 3 Jan 1948, NHS# 1234567890” is the identifiable data.
DATAMIND glossary
Benefits of an intervention reaching large groups of people.
MQ Base Glossary
Adapting an effective intervention that has been implemented in a small group of people to reach larger groups while retaining effectiveness.
MQ Base Glossary
Is like a smart tool that helps scientists guess or predict missing parts of a person's genetic code. It uses existing data and patterns to fill in the gaps and create a more complete picture of their genetic information. It's like completing a puzzle by using hints to guess what the missing pieces might look like. This helps researchers study a wider range of genetic variations and understand more about a person's unique genetic makeup.
DATAMIND Glossary
These are events or meetings where people from a various industries related to mental health, e.g. pharmaceutical, digital therapeutics, well-being, get together to talk about important subjects or problems that are relevant to the field. It's a way for industry representatives to share ideas, knowledge, and solutions to common issues.
DATAMIND Glossary
The UK’s independent authority for data protection. The ICO oversees the application of the Data Protection Act. If you have questions about data protection or want to report a data breach, you can reach out to the ICO through:

  • Helpline: Call the ICO helpline 0303 123 1113 for assistance and advice.
  • Online Form: Use the online contact form on the ICO website (https://ico.org.uk) to send inquiries

Reporting Data Breaches:

  • If you suspect a data breach, you can report it to the ICO. Provide details about the breach and the organisation involved.
DATAMIND Glossary
Information Governance (IG) is how an organisation takes care of its information or data. It involves strategies and processes for collecting, storing, securing, using, protecting and disposing of data safely, while also respecting privacy. IG ensures that data is managed well throughout its life cycle, following guidelines and laws. It helps organisations handle data responsibly, protect it from risks, and use it in a way that follows rules and keeps people's information safe.
DATAMIND Glossary
The process of introducing new ideas, methods, products, services, or practices that result in meaningful positive, change or advancement. It can involve the development of a new solution or repurposing a solution for a new use. It can manifest in incremental improvements, breakthrough inventions, or disruptive changes that significantly impact the mental health field.
MQ Base Glossary
Coordination and collaboration among different healthcare providers and other settings to ensure comprehensive and seamless care for individuals e.g. child and adolescent health services and schools.
DATAMIND glossary
Integrated care boards (ICBs): statutory bodies that are responsible for planning and funding most NHS services in the area
The King's Fund
Integrated care partnerships (ICPs): statutory committees that bring together a broad set of system partners (including local government, the voluntary, community and social enterprise sector (VCSE), NHS organisations and others) to develop a health and care strategy for the area.
The King's Fund
Integrated care systems (ICSs) are partnerships that bring together NHS organisations, local authorities and others to take collective responsibility for planning services, improving health and reducing inequalities across geographical areas. There are 42 ICSs across England, covering populations of around 500,000 to 3 million people.
The King's Fund
Approaches which combine coordinated efforts from different sectors and disciplines (e.g. international organisations, universities, physical health education, economic development, etc.
MQ Base Glossary
Systematic actions for preventing, detecting, managing or treating a mental health issue.
MQ Base Glossary
A jigsaw attack is when someone tries to find out who a person is from data that was supposed to hide their identity. It's like solving a puzzle by putting together different pieces of information to figure out who the person is. For example, if there's data saying that a "57-year-old woman with anxiety" was in a bus accident, and a newspaper reported the accident and mentioned her name, someone could use both pieces of information to discover her identity and the fact that she had anxiety. Jigsaw attacks can be done by people with bad intentions who want to learn personal information about someone, or by security researchers testing how well data protection systems work. Usually, jigsaw attacks are against the law, but there are special cases where they are allowed, such as when testing privacy systems. It's surprising how even a small amount of information can sometimes be enough to identify someone. However, if the data is about groups of people rather than individuals, jigsaw attacks become much harder or even impossible, especially when dealing with larger groups.
DATAMIND glossary
Lived experience experts (see also EA)
MQ Base Glossary
The Liebowitz Social Anxiety Scale (LSAS) is a 24-question self-assessment tool used to measure social anxiety disorder. It was developed by Dr. Michael R. Liebowitz in 1987. The scale asks you to rate how much anxiety you feel in different social situations and how often you avoid those situations because of your anxiety. There are two parts to the scale:

  • Fear (anxiety level) for each situation (rated from 0 (none) to 4 (severe))
  • Avoidance of each situation (rated from 0 (never) to 4 (always))

The total score is the sum of your fear and avoidance ratings. Higher scores indicate a greater severity of social anxiety disorder. See scale: https://psychology-tools.com/test/liebowitz-social-anxiety-scale

MQ Base Glossary
Joining (linking) data from more than one source. For example, to study the relationships between mental and physical health conditions, it might be necessary to link data from NHS mental health services to primary care (GPs) or acute hospital data. To study the relationships between health conditions and education, it might be necessary to link data from health services and a government education department.
Linkage may be legally complex because it involves data from more than one data controller. Linkage may be based on straightforward rules (“two records with the same NHS number are from the same person”) or based on probability (“if two records share the same forename, surname, and date of birth, they are more likely to be from the same person”). Links may be made using identifiable data (e.g. NHS number) or de-identified data (e.g. a research pseudonym).
DATAMIND glossary
Lived experiences refer to the experiential knowledge of someone who has personal experiences of a particular phenomenon. Within the brain health landscape, lived experience can refer to someone with personal experience with mental or neurological challenges, whether they have lived with the condition themselves or have cared for a friend or family member with the condition.
DATAMIND glossary
Insights and perspectives gained from individuals who have directly experienced a particular condition e.g. depression or situation e.g. carer.
DATAMIND glossary
A living systematic review is a dynamic and continuously updated version of a traditional systematic review. Unlike traditional reviews, which are static and represent a snapshot in time, living reviews are regularly updated as new evidence becomes available. This means that researchers constantly monitor for new studies and incorporate them into the review, ensuring that the conclusions remain up-to-date and relevant. Living systematic reviews are particularly valuable in rapidly evolving fields where new evidence emerges frequently, allowing for ongoing assessment and adaptation of recommendations.

GALENOS Glossary

A country with a low or middle total income in proportion to its population, as defined by the World Bank (https://datatopics.worldbank.org/world-development-indicators/the-world-by-income-and-region.html)
MQ Base Glossary
Is a method used to read longer sections of a person's genetic code all at once. This technique provides more detailed information about complex parts of the genetic material, giving scientists a better understanding of the individual's genes. It's like reading a longer paragraph in a book, which helps us see the whole picture and discover more about someone's unique genetic makeup.
DATAMIND glossary
A collection of data related to the same group of people over a long time to see how things change. This may involve asking the same questions at different ages.
DATAMIND glossary
Ongoing studies that follow the same group of individuals over time to gain insights into their health and well-being.
DATAMIND glossary
Letters of Support
MQ Base Glossary
Contexts where money, professional experts, tools, and commitment to mental health are limited.
MQ Base Glossary
Machine learning is like teaching a computer to learn on its own. It can find patterns in data and make predictions about what might happen in the future based on the data. ML algorithms (which are computer programs) can work by themselves (“unsupervised”) to discover patterns, or can be trained to classify data automatically based on examples classified by a human (“supervised”). Machine learning can do impressive things like spotting breast cancer in X-ray pictures. But there are two problems. First, what is learnt in one system doesn't always work in another. Second, is that a system taught by machine learning may be like a “black box”: it might be difficult for a researcher, clinician, patient or member of the public to understand how it reached its decision, and therefore to trust its results.
DATAMIND glossary
Groups of people actively excluded from or neglected by society and institutions. These groups could be based on age, gender, sexual orientation, race, physical ability, etc.
MQ Base Glossary
A process to investigate a health-related question. Often to see if it can improve care and treatment for patients or systems in the NHS. Research is conducted in research “studies” or “projects”.
DATAMIND glossary
Mediators are factors which affect how treatments work. E.g. why are some treatments more effective than others

GALENOS Glossary

Investigate cause and effect in health research.

GALENOS Glossary

The ability of a person to make an informed decision. In the UK, the law sets out what this means. Research involving people whose mental capacity is impaired has to follow special rules to keep participants safe. People's ability to understand things can change based on their health and situation. When they agree to something, it's important to check if they understand because this can sometimes be tricky to figure out. That's why it's necessary to assess their understanding right when they agree.
DATAMIND glossary
Medical data relating to mental health (psychological or psychiatric) problems and health care.
DATAMIND glossary
Knowledge, skills and beliefs about mental disorders which aid their recognition, management or prevention.
MQ Base Glossary
Knowledge, skills and beliefs about mental disorders which aid their recognition, management or prevention.
DATAMIND glossary
A prototype platform that uses advanced technology to analyse text files from various mental health services. It helps process and understand the information using natural language processing algorithms. The text is made anonymous or replaced with fake information to prevent identification. Strong security measures, like encryption and controlled access, are in place to ensure this protection. Regular checks are done to keep the platform secure and compliant with privacy rules.
DATAMIND glossary
'Meta-analysis' is a method of combining the numerical data from several studies on the same topic. Systematic reviews may include one or more meta-analyses, but they can also have no meta-analysis, if statistical combining of the numerical data is not possible or appropriate. Meta-analysis gives a clearer picture than any single study.
MQ Base Glossary
'Data about data!'. Metadata is a description of a data table, letting us know what it’s about (e.g. “this table records referrals for psychological therapy”), what’s in it ((e.g. whether it’s a number, a date, a code with a few possible values, or free text) and what things mean (e.g. “code P means a referral from the GP, code S means a referral from a Consultant doctor”). Think of metadata as a detailed guide that helps you find and explore data, much like an index or table of contents. It gives us extra details that make the data easier to understand and use.
DATAMIND glossary
Systematic reviews that explore how research – both clinical trials and systematic reviews themselves – should be conducted and reported are called Methodology reviews.
MQ Base Glossary
DNA microarray is like a super microscope slide with thousands of tiny spots, and each spot has a specific DNA sequence or gene. It's a tool used in the lab to check the activity of many genes all at once. This helps scientists understand which genes are active and how they might be influencing things in our bodies.
DATAMIND glossary
A country with neither particularly low nor particularly high total income in proportion to its population, as defined by the World Bank (https://datatopics.worldbank.org/world-development-indicators/the-world-by-income-and-region.html)
MQ Base Glossary
Missingness means that some data is not available or is incomplete in a dataset. It's like having a few pieces missing from a puzzle, which can make it harder to see the whole picture.
DATAMIND Glossary
This sort of research mixes methods. It often includes analysis of numerical data (quantitative research) and analysis of interviews with people (qualitative research) to get a clearer picture of something.
DATAMIND glossary
Multiple Long-Term Conditions
MQ Base Glossary
The UK's Medical Research Council (MRC) is a government organisation that funds and supports scientists. These scientists’ study medical topics to discover better ways to keep us healthy and treat illnesses. Since 1913, they've been involved in this effort, uncovering important information that supports medical professionals in caring for us. The MRC funds DATAMIND.
DATAMIND glossary
A narrative (or traditional literature) review is a comprehensive, critical and objective analysis of the current knowledge on a topic. They are an essential part of the research process and help to establish a theoretical framework and focus or context for your research.
MQ Base Glossary
The National Data Guardian for Health and Social Care advises the UK government and NHS on the processing of health and adult social care data in England. They are independent and appointed by the Secretary of State for Health and Social Care by statute. Their job is to make sure people’s confidential information is safeguarded securely and used properly. Both the Caldicott Guardian and the National Data Guardian protect patient information. The National Data Guardian oversees data use across the entire UK health sector to ensure proper use of patient info. The Caldicott Guardian focuses on data protection within individual healthcare organisations.
DATAMIND Glossary
Healthcare processes and services decided on and organised by a nation’s government.
MQ Base Glossary
By default, patients are included in the system. But if you don't want your private information to be shared, you can choose to opt-out using the National Data Opt-out in England. The NHS National Data Opt-Out allows you say 'no' to sharing your personal information for things like research without asking you first. This comes from the NHS Act Section 251. However, if your information can't be linked to you or the NHS only uses it for their own purposes, this rule doesn't count. Sometimes, if they get special permission (Section 251 approval), they can still use information that identifies you. The trouble is, not many people know about this choice to opt-out. Usually, patients are added automatically unless they decide not to be. To say 'no':

  • Online: Go to the National Data Opt-Out website
  • Paper Form: Get a paper form from your doctor and send it back.

When you decide to opt-out, your personal information remains exclusively for your medical care.

DATAMIND glossary
No cost extension
MQ Base Glossary
The National Health Service (NHS) refers to the publicly funded health care systems in England, Scotland, and Wales. In Northern Ireland, it is known as Health and Social Care (HSC).
DATAMIND glossary
In the UK, the use of health information is regulated by a number of laws and rules e.g. Data Protection Act. In England, the NHS Act 2006 is also important for this. It has been amended and clarified by other laws. Government Ministers also create additional regulations along with it. The duty of confidentiality in health care also comes from common law (which is to say, case law coming from court cases rather than statutes decided by Parliament) and has a part in the regulation of the use of health information. The NHS doesn't just rely on patient agreement to keep records, especially when patients can't consent. There are different ways data is used:

  • Needed Services: For medical help.
  • Legal Duties: To follow record-keeping laws.
  • Saving Lives: When there's urgent danger.
  • Public Tasks: For public health duties.
  • Fair Interests: Balancing organisation and individual needs.
  • Common Law: From court cases about confidentiality.

All these ways help protect patient info, and agreement isn't always the only thing that matters, especially under the NHS Act and related rules.

DATAMIND glossary
Research is often carried out with the explicit consent of the patients involved, or by using de-identified data to protect their privacy. However, there are circumstances in England and Wales where research can be conducted using identifiable patient data without their consent. This is allowed under the General Data Protection Regulation (GDPR) and the Data Protection Act (DPA) if the research is deemed to be in the public interest. For this type of research, specific approvals are required not only from a Research Ethics Committee (REC) but also from the Confidentiality Advisory Group. Additionally, it is subject to a national opt-out, meaning that patients have the option to choose not to have their identifiable data used for research purposes. One well-known example of research conducted in this manner is the National Confidential Enquiry into Suicide and Safety in Mental Health. However, there are numerous other projects that follow similar protocols. In some cases, only basic identifiable information such as names and dates of birth is used to link data, and this information is removed before researchers see it. Even then, special approvals may still be necessary. To ensure transparency, there is a public register where approved Section 251 research projects are listed, allowing individuals to access information about ongoing studies conducted with identifiable patient data.
DATAMIND glossary
Research studies that use real-world events or policy differences between nations or areas to understand their different impacts on populations. These studies don't involve direct intervention or manipulation by researchers.
DATAMIND glossary
Computer software exists to “read” free text written in a natural (human) language, and attempt to extract it as structured information. However, there are limitations because words can have different meanings, and the software cannot understand emotions or the intentions behind why certain words were chosen. Examples of NLP include, programs to find medications, drug treatment side effects, diagnoses, blood tests, recorded thoughts of suicide, “negative” symptoms of schizophrenia, and so on. NLP is difficult because grammar is complex. An NLP program to find hopelessness as a symptom of depression might need to distinguish “X is feeling hopeless” from “X used to feel hopeless but is now better”, “X’s spouse is feeling hopeless”, and “X said he is hopeless at football”. NLP programs are imperfect, and need checking when they are designed in one context and then used in another, but may still be very useful. NLP is mostly used for research, but as NLP improves, it could become common in clinics and hospitals because it helps doctors understand and use patient information better. For instance, it might assist doctors in quickly finding important details in medical records, making diagnoses faster and more accurate.
DATAMIND glossary
Are the small building blocks that make up our genetic code. They are like the letters in a secret code, and they come in four different types: A, T, C, and G in DNA, and A, U, C, and G in RNA. These nucleotides join together in a specific order to create the instructions that tell our bodies how to grow, develop, and function. They are the basic units of our genetic information, which is passed down from parents to children, shaping who we are.
DATAMIND glossary
Number needed to harm. It is defined as the number of people who would need to be treated over a specific period of time before one bad outcome of the treatment will occur.
MQ Base Glossary
Number needed to treat. It is the number of patients you need to treat to prevent one additional bad outcome (death, stroke, etc.).
MQ Base Glossary
The odds ratio is a ratio of two sets of odds: the odds of the event occurring in an exposed group versus the odds of the event occurring in a non-exposed group.
MQ Base Glossary
Office for Life Sciences. The Office for Life Sciences champions research, innovation and the use of technology to transform health and care service.
MQ Base Glossary
Observational Medical Outcomes Partnership
MQ Base Glossary
An ontology is a classification system that includes representations of entities with clear and unique alphanumeric identifiers, labels and definitions and their relationships. In computer science, an ontology is a formal representation of the concepts, relationships, and properties within a particular domain. It is used to organize information and make it easier for computers to understand and process. In philosophy, ontology is the branch that studies the nature of being and existence. It asks fundamental questions about what exists, what it means to exist, and how different things are related to each other. A taxonomy, on the other hand, is a hierarchical classification of entities based on their characteristics and relationships. It is used to organise and categorise items in a domain according to their similarities and differences. In other words, an ontology is a way of modelling knowledge, while a taxonomy is a way of organising it. Both are used in knowledge management and information science, but they serve different purposes.
MQ Base Glossary
Where people choose to be “in” to participate, or not included (e.g. choosing to volunteer for research). If they don't make that active choice, they won't be included or involved in the research. So, it's all about individuals deciding to be "in" and participate, rather than being automatically included.
DATAMIND glossary
When people have to specifically decide not to be part of research, or share data that already exists they will automatically be included. For example, when it comes to using their anonymous health data for research, if people don't actively opt out, their data will be included. So, it's about people having to take action to be "out" and exclude themselves.
DATAMIND glossary
The ORCID is a non-proprietary alphanumeric code to uniquely identify authors and contributors of scholarly communication as well as ORCID's website and services to look up authors and their bibliographic output.
MQ Base Glossary
A typical example or pattern of something; a pattern or model. A paradigm is a prevailing set of ideas, explanations, and methods within a particular field. It defines how scientists approach problems, conduct research, and interpret results.
MQ Base Glossary
"Participatory Research" can have different meanings depending on the situation. In one sense, it's when regular people take part in research. This kind of research usually involves meeting with researchers, and providing information or undergoing tests like questionnaires or brain scans. It can even include testing new treatments. In these studies, only those who agree to join are included. This is part of participatory research, and it's important that everyone knows all about it. This is where "Informed Consent" comes in. Informed consent is a big rule in participatory research. It means before someone says yes to joining a study, they need to understand everything important about it, like what the study wants to find out and what could be good or bad about it. Informed consent makes sure people decide with full knowledge. Sometimes, people who can't make decisions for themselves might be part of participatory research. But this only happens if the study is about the condition that makes it hard for them to decide, like dementia. This way, they can still be part of research that fits their situation.
DATAMIND glossary
"Engagement" means sharing information and knowledge about research with patients and the public. This can be done through conversations with researchers, websites, written papers, or public events where the public and/or patients are invited to attend, participate and learn. The goal is to communicate research findings and insights to a wider audience.
DATAMIND glossary
"Involvement" means that research is done alongside "with" or "by" patients or members of the public (e.g. as advisors or researchers). In contrast to research “to”, “about” or “for” them. This is very different to participation in research. Patient and Public Involvement (PPI) means that people who have personal experience of a specific condition or situation are included in the planning, conduct, and application of research studies. They have a say in how the research is designed and carried out, ensuring that it meets their needs and is more relevant to their real-life experiences. By involving patients and the public, research becomes more focused on what matters to them, leading to better outcomes and benefits for everyone involved. To ensure patients and the public have a direct voice in the running and direction of DATAMIND, a Super Research Advisory Group (SRAG) was created. It is composed of people from various backgrounds, including service users and carers from across the UK, who have an interest in data. Many have connections to similar Research Advisory Groups in their local areas and to local communities interested in mental health problems. The SRAG plays a vital role in DATAMIND and contributes to all aspects of the project.
DATAMIND glossary
Someone who uses health care services (such as GPs, hospitals, and clinics).
DATAMIND glossary
PECO - Population, Exposure (risk factors), Comparator (nonclinical controls in included studies) and Outcomes (cognitive outcomes). See also PICO

GALENOS Glossary

After completing research, the findings are usually sent to a scientific journal as a manuscript or paper. The journal's editor then shares the paper with other experts in the field, called peer reviewers or referees and sometimes public/lay/lived experience reviewers, e.g. BMJ (British Medical Journal). These reviewers assess the research by looking at things like the methods used and whether the conclusions are supported by the results. They may suggest changes before recommending publication, or they may advise against publishing. Peer review is considered the “gold standard” for research, but it doesn't guarantee that the research is always correct. It serves as a thorough evaluation process to ensure the quality and validity of scientific studies before they are shared publicly.
DATAMIND glossary
Occurs when there are differences in the care provided to the participants in the study groups, other than the interventions being compared. This bias may also be related to patients' expectations about the effectiveness of intervention. Performance bias is prevented by ​blinding or masking study participants and health care personnel providing interventions in the trial.
MQ Base Glossary
A short term for pharmaceutical, which refers to companies or organisations involved in developing and producing drugs.
DATAMIND glossary
Approaches to improving mental health focused on or related to the use of medication.
MQ Base Glossary
Psychological Health dAta SciencE
MQ Base Glossary
A phenotype is a set of traits or characteristics that can be observed or measured related to a particular concept or diagnosis. It includes things like physical descriptions (e.g., age, height, weight), health conditions, medications, and other measurable factors.
DATAMIND glossary
A repository or collection of standardised definitions and measurements of specific characteristics or traits used in research.
DATAMIND glossary
Ways the brain and/or body work which could make someone more likely to experience mental health issues.
MQ Base Glossary
Factors relating to an individual’s body or biology. They may be influenced by a combination of genetic, lifestyle or other factors.
MQ Base Glossary
PICO format for research questions. A good research question is focused and precise. The question should detail: Population, Intervention, Comparison and Outcome (also see PECO)
MQ Base Glossary
A platform agnostic product runs equally well across more than one platform.
MQ Base Glossary
The NHS Constitution for England promises that patients’ anonymous data will be used for research and to improve the care of others.
DATAMIND glossary
Plain Language Summary
MQ Base Glossary
Public and Patient Involvement and Engagement
MQ Base Glossary
Refers to the differences in age of death and death rates across specific groups of people e.g. those with severe mental illness. It highlights a health inequality where specific populations face higher rates of death.
DATAMIND glossary
Actions to keep mental health conditions from developing in the first place, including supporting those who are particularly at high risk, as well as preventing problems from reoccurring.
MQ Base Glossary
Data collected in primary care settings, such as general practitioner (GP) clinics, which provide the first point of contact for people seeking healthcare.
DATAMIND glossary
The researcher in charge of a study at a particular site (e.g. hospital or university). For a research study at a single site, this is the same as the chief investigator They are responsible for overseeing the study's progress, coordinating with the team members involved, and ensuring that the research is conducted according to the planned protocols. The PI plays a crucial role in managing the study.
DATAMIND glossary
Well-off groups of people who face fewer obstacles in life than other groups and who are centred in societal institutions (i.e. they are not considered disadvantaged or marginalised). These groups could be based on age, gender, sexual orientation, race, physical ability, etc.
MQ Base Glossary
Systematic reviews that address the probable course of a condition or the future outcomes for people with a health condition are called ‘reviews of prognosis studies’.
MQ Base Glossary
Maintenance and improvement of health and well being by identifying the positive aspects of mental health, highlighting areas to promote and the goals to be attained.
MQ Base glossary
Formal plan which is carried out before carrying out a systematic review. Protocols include an introduction (background) describing the research problem and objectives and a detailed description of how the systematic review will be carried out (methods).
MQ Base glossary
Data where the direct identifiers e.g. names have been removed and replaced by a research identifier (ID) or “pseudonym”, typically random codes that make no sense. Some details, like the exact date of birth, might also be changed to be less specific. For example, instead of saying ""John Smith, a man born on May 5, 1980,"" the modified data would look like ""Research ID c430c2f7a298b4e7ccd8dd763e1d85f6, male, born 1980."" It may be possible and permitted for some people or organisations to re-identify or find the person, but it is impossible for others without those permissions. For example, the NHS Trust that performed the pseudonymisation could look up that c430c2f7a298b4e7ccd8dd763e1d85f6 is John Smith, but researchers analysing the data couldn’t.
DATAMIND glossary
Approaches to improving mental health centred on beliefs, attitudes and behaviours, typically through talking therapy.
MQ Base Glossary
Characteristics or facets that influence an individual psychologically and/or socially. Such factors can describe individuals in relation to their social environment and how these affect their physical and mental health.
MQ Base Glossary
Psychosis refers to a collection of symptoms that affect the mind, where there has been some loss of contact with reality. During an episode of psychosis, a person’s thoughts and perceptions are disrupted and they may have difficulty recognising what is real and what is not.
MQ Base Glossary
Circumstances that create an unusual or intense level of stress that may contribute to the development or aggravation of a mental disorder, illness, or maladaptive behaviour.
MQ Base Glossary
Psychotropic medicine deals with medications that affect the mind. These medications target the brain and nervous system to influence things like mood, emotions, thinking, and behaviour. Common types of psychotropic medications: Antidepressants: These help regulate brain chemicals involved in mood, aiming to lift depression symptoms. Antipsychotics: These can help manage symptoms of psychosis, such as hallucinations and delusions. Mood stabilizers: These help regulate extreme mood swings, often used for bipolar disorder. Anti-anxiety medications: These can help reduce anxiety symptoms like nervousness and worry. Stimulants: These can improve focus and attention, sometimes used for ADHD.
MQ Base Glossary
When NHS data is used for research, the patients who participate in the research don't usually get immediate benefits from it. However, the research is done with the hope that it will benefit the general public and patients in the future. The main purpose of this research is to learn more about the causes, characteristics, or effects of a disease or condition, and how to best treat it. This knowledge can then be used to help others who may have similar health problems in the future. Examples might include: Looking at who does and doesn’t get a particular condition, to discover what might put people at risk. Studying people with a disease or condition in detail, to understand their problems or to develop new ideas about how to help them. Conducting a trial of a new treatment with volunteers who have a particular condition, to see if it works. Studying people who have had a certain treatment, to see how well it works or what side effects it has. These days, the published results of research funded by UK public bodies must be made available freely to everyone. Nearly all peer-reviewed medical research can be found at PubMed (https://pubmed.ncbi.nlm.nih.gov/)
DATAMIND glossary
Sharing of project information or findings with the general public.
DATAMIND glossary
Approaches to improve mental health through the organised efforts and informed choices of society, public and private organisations, communities and individuals. These can be a local neighborhood, an entire country, or region of the world.
MQ Base Glossary
Analysis without numbers means studying information based on qualities rather than quantities. Instead of focusing on numbers and statistics, this type of analysis looks at themes. It often involves interpretation and exploration, trying to understand the meaning behind the information. One way to gather this qualitative data is through interviews with the people involved, where their perspectives and experiences are shared and analysed. This approach helps researchers gain a deeper understanding of the subject matter by delving into the rich details and personal insights provided by participants. Another example is asking a focus group about a topic and teasing out themes in their responses (thematic analysis).
DATAMIND glossary
Is the process of carefully checking and verifying the data or samples has been finished. It's like doing a thorough inspection to make sure everything is accurate and free from errors. This step ensures that the data meets specific quality standards and is reliable for further analysis or use. It's like giving the data a green light, saying it's good to go!
DATAMIND glossary
Systematic reviews that bring together qualitative research to answer questions about aspects of health other than effectiveness, (for example patient experiences, the meaning of symptoms for individuals, or reasons for taking an intervention or not), are called ‘qualitative evidence reviews’.
MQ Base Glossary
Analysis using numbers means studying data by focusing on quantities and measurements. This involves using mathematical and statistical methods to analyse and interpret the information. Researchers look at numerical values, such as counts, percentages, averages, or correlations, to gain insights and draw conclusions from the data. This type of analysis allows for objective and quantitative assessment of trends, patterns, and relationships within the data.
DATAMIND glossary
Randomised controlled trials – volunteers are assigned to groups, special techniques are used to make sure it is done completely at random. This means each person has the same chance of being placed in any of the groups. Randomised controlled trials should include enough patients to avoid seeing a difference that does not really exist, or missing one that does.
MQ Base Glossary
An experiment to test an intervention, such as a new medication. In a typical study, people with a condition are randomly assigned to two conditions. One group is given the new medication and the other are given a placebo (dummy) medication as the “control” condition. Having a control group is important because some changes may not be due to the medication but would have happened anyway. In a “double-blind” trial, neither the patients nor their clinicians know which is which. This is the best way to test if a treatment works. It's done this way to make sure that the results are not influenced by people's expectations or biases. By comparing the outcomes of the two groups, researchers can determine if the new treatment is effective or not. All fair tests (RCTs) follow strict rules and involve everyone in the research process. This way, everyone takes part. The process includes comprehensive quality control and rigorous quantitative analysis.
DATAMIND glossary
Relatedness refers to how genetically similar or connected individuals are to each other. It's like knowing if people in a study are siblings or cousins, which can affect how their genetic information is analysed and interpreted.
DATAMIND glossary
All research that involves NHS patients or data must get permission from an NHS Research Ethics Committee (REC). This committee includes both researchers and members of the public. REC’s job is to make sure that the research is planned and conducted in a fair and ethical way and that it benefits the public. The committee looks at the research proposal to check if it meets ethical standards. They want to make sure that the rights and well-being of the patients are protected. They also want to see if the research will have a positive impact on the public by improving our understanding of health or finding better ways to provide care. By going through this approval process, the NHS makes sure that research involving their patients or data is done in a responsible and ethical manner, and that it helps the public in some way. Some types of research need approvals from other regulatory or NHS organisations as well. (There are other kinds of RECs too: for example, research in a university with healthy volunteers would usually be approved by a university REC, not an NHS REC.)
DATAMIND glossary
Research governance is a process for ensuring the quality of research, and for protecting the rights, dignity, safety and wellbeing of those involved. This might include service users, people with lived experience, families, professionals and researchers.
MQ Base Glossary
Is a process of prioritising a list of competing ideas for future research.

GALENOS Glossary

Monitoring and evaluation programme for research, mostly UK. MQ grantees have to report on this as part of their Ts & Cs.
MQ Base Glossary
Request for proposal A request for proposal is a business document that announces a project, describes it, and solicits bids from qualified contractors to complete it.
MQ Base Glossary
Is like taking a snapshot of the messages that our genes are sending out. It helps scientists understand which genes are active and producing proteins at a specific moment. This method provides valuable insights into how our genes work and how they affect our health and well-being. It's like eavesdropping on the genetic conversations happening inside our cells.
DATAMIND glossary
Data collected by health, social, or school services during their everyday tasks, like doctor visits or school days. This is also known as ""routinely collected data"" or ""real-world data."" This data is not specifically gathered for research purposes. For example routinely collected health data includes details about a patient's medical history, diagnoses, treatments, medications, and other relevant health information. Researchers can use this data to analyse trends and associations and gain insights into real-world healthcare practices.
DATAMIND glossary
A secure privacy protecting database of information that researchers can use for their studies. It contains data from various sources, but personal information is removed to protect privacy. Researchers from different fields can access SAIL to collaborate and conduct research that helps patients and the general public according to the Five Safes.
DATAMIND glossary
A digital platform for schools to access data and resources for addressing mental health issues in children and young people
DATAMIND glossary
A research network focused on improving health and well-being in schools, particularly in Scotland. Similarly to SHRN carries out a survey.
DATAMIND glossary
A research network focused on studying health-related issues in schools, particularly in Wales. It carries out a survey of all secondary school children in Wales every two years.
DATAMIND glossary
Shared decision making. SDM is about taking a personalised approach that routinely recognises and takes account of people’s health, wellbeing, social circumstances, preferences and values and helps them understand the evidence based options available to them.
MQ Base Glossary
Sham training is a common technique used in studies evaluating the effectiveness of interventions like Attention Bias Modification (ABM), Cognitive Bias Modification (CBM), and Approach-Avoidance Training (AAT). It acts as a control condition to isolate the specific effects of the real intervention. How sham training works: Mimics the format: Sham training replicates the look and feel of the actual training program, including similar tasks and durations. Lacks the key component: Crucially, the sham training removes the element designed to target the specific cognitive bias or motivational response. For instance, in an ABM study focusing on attention towards positive stimuli: Real training: Participants might see positive and negative words on a screen, instructed to focus faster on positive ones. Sham training: Participants might see the same words but receive no instructions regarding focus, essentially completing a regular attention task. Why sham training is important: Controls for placebo effects: Participants in any study can experience improvement simply because they believe they're receiving help. Sham training helps distinguish these effects from the specific intervention's impact. Identifies non-specific effects: The training format itself might influence behavior (eg. getting better at computer tasks). Sham training isolates these effects. By comparing results between real and sham training groups, researchers gain a clearer understanding of whether the intervention truly modifies cognitive biases or motivational responses.
MQ Base Glossary
South London and Maudsley NHS Foundation Trust. (a large mental health trust in South London, it pioneered the CRIS system and hosted the UCL CRIS system on its own servers).
DATAMIND glossary
Standardised mean difference (SMD). SMD is a summary statistic used when the studies in meta-analysis assess the same outcome, but measure it in different ways.
MQ Base Glossary
Severe Mental Illness (an acronym used by primary and secondary care services, which usually refers to schizophrenia, bipolar or ‘other’ psychosis diagnosis). However it is worth noting that other types of diagnosis can have a ‘severe’ impact on people’s lives such as anxiety or eating disorders dependant on their symptoms, how they can function in the world and context.
DATAMIND glossary
Systemized Nomenclature of Medicine. SNOMED CT is a structured clinical vocabulary for use in an electronic health record. It is the most comprehensive and precise clinical health terminology product in the world. SNOMED CT is a clinical vocabulary readable by computers. SNOMED CT is an important requirement for electronic patient records.
MQ Base Glossary
Characteristics of individuals or populations related to social and demographic aspects such as age, gender, ethnicity, socioeconomic status, and education level.
DATAMIND glossary
The improvement of people’s social and economic circumstances, such as providing employment and educational opportunities, etc.
MQ Base Glossary
Super Research Advisory Group – work for Datamind. The group ensures people with lived experience are represented.
MQ Base Glossary
Serotonin Selective Reuptake Inhibitor (a class of antidepressant medication that works using this mechanism)

DATAMIND Glossary

People or groups or organisations who have a strong link, interest or involvement in a project, project area or initiative. They care about the project's outcome and are often directly affected by it.

DATAMIND Glossary

The process of connecting with people of particular importance or relevance to involve them in a conversation or activity. 

MQ Base Glossary

The process of connecting with people of particular importance or relevance to involve them in a conversation or activity. 

MQ Base Glossary

Statistical analysis is a way of testing research questions (hypotheses) using data. However, it recognises that data can be "noisy" and contain all sorts of sources of variation or error, some of which are random (happen by chance) and some are not. Statistical analysis relies on mathematical theory and has been developed and used for more than a hundred years to make sense of data and draw meaningful conclusions.

MQ Base Glossary

A group of individuals who offer strategic guidance and advice to an organisation or project. They provide valuable input and recommendations to help shape the direction and decision-making processes.

DATAMIND glossary

Sections in electronic health records where specific information is organised and categorised in a way that makes it easy to analyse. These fields are designed to store data in a standardised format, making it more accessible and consistent for healthcare professionals and researchers.

DATAMIND glossary

A language that helps organise and work with information stored in databases. It allows people to easily find and use data from databases, like looking up specific information or making changes to the data.

DATAMIND glossary

Structured data is organised and formatted in a way that makes computer analysis easy. It is typically stored in a database as tables, where each column represents a different type of information (like numbers or words), and each cell in the table holds a single piece of data. This organisation helps with sorting, searching, and understanding the data more easily.

For example, in an EHR system, there might be tables like “patient”, “referral”, “diagnosis”, and “blood test”. The “diagnosis” table might contain columns like “patient number”, “diagnosis code”, “start date”, and “end date”. Other kinds of complex structure may also be used (e.g. for genetic information).

DATAMIND glossary

A group of diverse individuals, including service users and carers with lived experience, who are interested in data and provide valuable advice and guidance to the project. They help make important decisions and ensure the project is relevant and responsive to the needs of patients and the public.

DATAMIND glossary

Synthesis is a form of analysis related to comparison and contrast, classification and division. On a basic level, synthesis involves bringing together two or more sources, looking for themes in each. In synthesis, you search for the links between various materials in order to make your point.

MQ Base glossary

A systematic review is a study that summarises and structures evidence on a specific topic or question. It involves gathering all relevant studies, evaluating their quality, and then synthesising their findings to provide a reliable overview of what the evidence says. Systematic reviews are often considered the gold standard in evidence-based research because they reduce bias and provide more robust conclusions compared to individual studies.

GALENOS Glossary

The process of examining and understanding written information, like electronic health records or other text-based content, to find important and useful insights. It involves analysing the text to identify patterns, trends, or valuable information that can be used for various purposes, such as research or decision-making.

DATAMIND glossary

Refers to how a person reacts or responds to a specific treatment or intervention. It describes the outcome or result of the treatment and helps assess its effectiveness in addressing a particular condition or improving a person's health.

DATAMIND glossary

A secure computing environment, where data can be analysed that is too sensitive to be made public. This might be data that could uncover someone's identity, or information that's been modified to hide personal details but still carries a slight risk of being pieced together to reveal someones identity.

A Trusted Research Environment (TRE) serves as an excellent example of such a safe place. TREs handle various aspects: they control what data and analysis tools are brought in, determine who's allowed entry through strict authentication and authorisation, set the boundaries for what researchers can do, and ensure that any findings don't unintentionally expose confidential information. Many TREs even offer highly secure "remote desktop" setups, enabling researchers to work from afar, and some go the extra mile by having cameras to monitor researchers.

The best way to picture it is by comparing it to a secure and monitored library. Imagine a researcher going into the library to read or work on stuff, but they can't take the books away. Plus, anything they do in the library is closely watched and monitored. To sum up, a TRE provides an absolutely secure and closely monitored setting for working with private data.

DATAMIND glossary

This is a university in London, it used to stand for University College London before it was rebranded as ‘UCL’

DATAMIND glossary

UK Research Institute (previously known as the Medical Research Council)

MQ Base glossary

The processes involved in making a condition come to exist (including physical, psychological and environmental / social processes).

MQ Base glossary

Underserved populations are groups or communities that face limited access to resources, services, or support due to barriers like social, economic, or systemic factors.

DATAMIND glossary

Unstructured data is a bit misleading because all data inherently has some structure. However, researchers use this term to describe data that has limited or challenging structure for analysis electronically. Examples of such unstructured data include free text, like paragraphs of written information, or images such as X-ray or scan pictures, or scanned letters. These types of data are not easily organised in a way that computers can analyse directly, making it more difficult to extract information automatically compared to structured data that follows a format or layout divided for example into categories.

DATAMIND glossary

The way humans interact with a computer is known as the user interface (UI). Databases, which store information, are not very user-friendly, so Electronic Health Record (EHR) systems are designed to present information in a more understandable way for patients and clinicians. EHR systems focus on one patient at a time, making it easier for humans to navigate and enter data rather than a database which might contain information about thousands of patients.

A good EHR user interface (UI) is designed to help users quickly find important information. It prominently displays alerts, such as allergies, to ensure they are noticed. It also makes it easy to enter new information. Additionally, a good EHR UI may offer "decision support," which means it provides helpful reminders or suggestions. For example, it may warn about potential interactions between two medicines before prescribing them.

In summary, the EHR UI aims to present information in a clear and user-friendly manner, making it easier for humans to interact with the system, find information quickly, enter data efficiently, and receive helpful prompts when needed.

DATAMIND glossary

A variable is something that can change or have different values. In computing, it refers to a specific piece of information, like "date of birth," "haemoglobin level," or "diagnosis." These variables hold different data depending on the situation or individual being considered. For example, the variable "date of birth" can have different values for different people, representing their specific birth dates. Variables are used to represent different types of information in datasets.

DATAMIND glossary

A tool/software being developed for linking databases and extracting data for research projects.

DATAMIND glossary

Activities aimed at enhancing the skills, knowledge, and capabilities of people within a workforce or those with lived experience to increase capacity in a field.

DATAMIND glossary

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