Glossary

Borderline Personality Disorder (BPD), also referred to as Emotionally Unstable Personality Disorder (EUPD), is a diagnosis given to some people who experience the complex difficulties described above. No two people with BPD have exactly the same symptoms, which is one reason we’re undertaking this research. Tragically, around 10% of people diagnosed with BPD die by suicide, making it a life-threatening condition.

Some individuals never receive a diagnosis, while others do but find it doesn’t lead to effective treatment. For many, the diagnosis can be stigmatising and detrimental to their health and well-being. BPD is most common among people who have experienced trauma, particularly early in life, which can impact brain development and stress responses. Some suggest that "complex post-traumatic stress disorder" (CPTSD) might be a more helpful diagnosis, as it highlights the role of trauma.

Despite advances, we still know too little about how to help people with BPD. While psychological treatments are available, they can be hard to access. Additionally, despite the fact that over 90% of people with BPD are prescribed psychiatric medications, there is no clear scientific evidence that these medications are effective.

A type of research where a group of people with something in common (like birth year, similar health conditions or where they live) are followed over time, to see how various factors may affect their health or what happens to them. This approach helps researchers understand what might affect people's lives and how past experiences can have an impact later on. 

By "complex emotions," we mean experiences and feelings that are often confusing and difficult to manage. These may include challenges in relationships, fears of abandonment, difficulties regulating emotions, experiencing intense emotions or detachment (dissociation), and managing impulses like self-harm or suicidal thoughts.

Our hub is focused on research that aims to transform care and improve outcomes for those who experience complex emotional difficulties. Many people with these experiences are given the diagnosis of Borderline Personality Disorder (BPD), a label that is often problematic. It is associated with stigma, prejudice, and misunderstandings by health professionals.

Complex Post-Traumatic Stress Disorder (cPTSD) is a mental health condition that can develop after experiencing prolonged or repeated trauma, often in situations where a person feels trapped and unable to escape. This could include long-term abuse, neglect, domestic violence, or captivity. Unlike PTSD, which can result from a single traumatic event, cPTSD is linked to ongoing trauma.

Understanding how consent (or the lack of it) works for sharing healthcare data in the UK is essential. There are different rules depending on how easy it is to figure out who the data is about and where you are. In the UK, there's a rule that currently says you don't need to give informed consent if the data collected regularly is made fully anonymous. This means that your personal details are taken out, and no one can link the data back to you. However, it's a good question to ask whether all the data labeled as "anonymous" is truly untraceable. But, when it's about sharing personal healthcare data that can still identify you, it gets more complicated. The level of how easy it is to tell who you are and where you're located matters. Some places might want your agreement before they share your data, while others might not. It's important to note that the "National Data Opt-Out" is available in England. It lets you decide whether your data can be shared, even if you said yes before. This opt-out is like a way to say "no" to certain kinds of sharing. Remember, even though consent might not be explicitly requested in every situation, the choice not to ask for it is part of the current system.

Informed Consent and Choices:

Consent and informed consent are both about agreeing to something after understanding it fully. Regular "consent" involves knowing all the details and agreeing, just like when you give permission for the use of personal data in research after understanding the risks and benefits. "Informed consent" is a term we use when we want to emphasise that understanding is crucial before agreeing. In most cases, whether it's sharing personal data or participating in studies, consent should always be informed.

It's important to know that consent can change over time. People can decide to stop participating in research whenever they want, and this will not affect their healthcare treatment. This highlights how vital it is for researchers to keep talking with participants openly. This way, participants can freely decide what's best for them and feel like their choices matter.

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. 

Ecological Momentary Analysis (EMA) is a way of studying people's thoughts, feelings, and behaviors in real-time, as they go about their daily lives. Instead of asking people to remember what they felt or did at a later time (which can be hard), EMA involves collecting data at the moment it happens.

For example, someone might get a notification on their phone asking how they’re feeling right now, or what they’re doing, several times a day. This method helps researchers understand how emotions or behaviors change throughout the day, in real-world settings, giving a more accurate picture of a person’s experiences.

Electronic Health Records (EHRs) are digital versions of a person's medical history that doctors, nurses, and other healthcare providers use to store and manage patient information. These records include details like medical test results, diagnoses, treatments, medications, and notes from healthcare visits. Unlike paper records, EHRs can be shared easily between different healthcare providers, helping to improve the coordination of care and ensure that important health information is available when needed.

You may hear other names for BPD, such as:

• Emotionally unstable personality disorder (EUPD)

• Emotional intensity disorder (EID)

• Borderline pattern personality disorder (borderline pattern PD)

It's your choice which term, if any, you use. People have very different views.

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. 

An outcome is the way something turns out, or a result or consequence. Outcome measures are the important consequences studied in research. For example, when studying depression, researchers might see if a treatment makes symptoms better or worse, affects the amount of time people take off work, or alters their quality of life. (See also outcomes of research.) 

Phenotyping is a way of describing and understanding the characteristics or traits of a person, animal, or plant. These traits can include things like how someone looks (eye color, height), their behavior (how they respond to stress), or how their body works (like their blood pressure or immune response). Phenotyping helps scientists study how these traits are linked to genetics, environment, and other factors. It's used in medicine to understand why some people are more likely to get certain diseases or respond differently to treatments.

A "wearable" is a small electronic device that you can wear on your body, like a watch or bracelet. These devices often have sensors that can track things like your heart rate, physical activity, sleep, and sometimes even stress levels. Smartwatches are a common type of wearable. They collect data while you're going about your day, making it easy to monitor your health or activity without needing to do anything extra.

A participant information sheet, is designed to give information to potential participants so they can make an informed choice to get involved or not in the research. Some of the wording we have to include for legal purposes such as around possible risk and right to withdraw and data ownership. We want this document to be inviting, formal but friendly and 100% truthful.