Beating chronic pain – the need for teamwork and listening to people with lived experience

People with lived experience of chronic pain need to be at the heart of research partnerships to tackle the prevalent, and complicated, challenge of chronic pain, a workshop organised by the Academy of Medical Sciences, the British Neuroscience Association (BNA), The Physiological Society and Versus Arthritis concluded.

Many of us are used to taking painkillers for the relief of short-term pain, such as aspirin, paracetamol, or ibuprofen. For many people there is a need for a greater range and strength of pain relief, and for some, their pain does not go away, even after several months. This ‘chronic pain’, as it is known, is difficult to treat and is common – it will affect more than four in ten people during their lifetime.

Chronic pain can have several causes. For example, it can be a result of damage or changes to nerve fibres after an injury or prolonged exposure to extreme environments. It is also seen in health conditions such as some cancers and arthritis. In many cases, it is not clear what the cause is, which can be frustrating for both patients and their doctors. 

 

“Every day it can feel like a battle, physically and mentally. On a good day, I hardly notice the pain, but on a bad day it is all I notice. And the exhaustion of trying to get through the day saps what energy I have. For me, the new anti-TNF treatment was transformative. And while it too has its side effects and its challenges, it has changed my life and given me back the life I really wanted. So, you’ll understand why I’m passionate about the difference that research can make.”

Frances Borrer, speaker at the workshop who has lived with chronic pain due to arthritis for more than 40 years

 

Currently, there are not many effective treatments for chronic pain. Some cause significant side effects and carry a risk of addiction. Some work for some people but not for others. With many people suffering from chronic pain, new treatments are needed.

In December 2021, the Academy of Medical Sciences, the BNA, The Physiological Society and Versus Arthritis held a workshop that brought together a range of groups with an interest in chronic pain – including scientists, doctors and people who live with chronic pain – to discuss what needs to be done to speed up the development of new treatments.

The workshop heard how hard it is to develop new drug treatments for chronic pain. Scientists have developed many new drugs that they thought would relieve chronic pain, only to find that they do not work well when given to patients, or have side effects that mean they cannot be used safely.

In part, this is because chronic pain is very complex. The term ‘chronic pain’ covers a wide range of problems – one person’s pain might have very different causes and experiences to another person’s. What’s more, chronic pain can involve many different parts of our body and nervous system – including the nerves that sense damage to tissues, the nerve fibres that send messages to the brain, and the connected routes in the brain that process these incoming signals and create the sensation of pain.

As was stressed at the workshop, the injury, tissue damage, or health condition that triggers and worsens pain is only part of the story. Psychological factors are also a big part of how pain is experienced. If people are anxious or depressed, they are more likely to experience chronic pain and their chronic pain is more likely to be worse. This can create a cycle in which chronic pain causes people to have a range of emotional experiences including sadness, low mood, and hopelessness, which can make their pain worse.

A new model

Discussions at the workshop suggested some ways chronic pain research and drug development could be improved.

First, many participants agreed that, instead of grouping everyone under a heading of ‘chronic pain’, the condition should be broken down into different subtypes. This means working with people with lived experience of chronic pain to get a clearer picture of their symptoms, and studying their biology to find out what is causing their pain to persist. Drug development can then focus on groups of patients who have similar symptoms, and whose chronic pain has the same or similar underlying causes.

In order to develop drugs, scientists need to identify specific ‘targets’– key parts of our cells that are involved in the experience of chronic pain. By binding to a target, a drug can either dial down activity that is causing pain or dial up a process that provides pain relief.

Choosing the right target is vital. To date, most studies to identify suitable targets have started with animal models, usually rodents. At the workshop, participants suggested that scientists should instead start with studies of people to better understand why people are in pain, and use this knowledge to make new animal models that are more similar to human pain conditions. As a result, the drugs developed in animal models might be more likely to work when given to people.

Working as a team

This way of thinking about drug development – starting with a better understanding of chronic pain in humans – will depend on different groups working more closely together. Different types of scientists and doctors will need to join forces to better characterise pain in people. This might involve studies of their genetics, their biology, their life history and their emotional states. Much more data can now be collected directly from people about their experience of chronic pain, for example through smartphones or by use of ‘wearable’ technologies (which can continually record data).

Above all, it will mean listening more to people who live with pain, to understand what the experience is like and what matters to them – including what they want most from treatments. By doing this, scientists will not only be able to design better animal models, but also measure things that are most important to the people living with pain (even if animal models can never mirror exactly the psychological side of pain experienced by people). And when drugs are tested on humans in clinical trials, scientists and doctors can make sure they measure things that matter to the people living with chronic pain.

Another key group, also present at the meeting, are regulatory authorities. These bodies decide whether treatments should be licensed for use. They need to be sure that a treatment is safe and works effectively, which they do by looking at data from clinical trials. Scientists, doctors, people living with pain and regulators all need to agree on what should be measured in clinical trials to show that a treatment works, so conversations are needed that include all these groups.

 

"Chronic pain remains one of the greatest health challenges faced by society. We are grateful to the Academy of Medical Sciences and the partner organisations for bringing together those living with chronic pain, academics, health care professionals and the pharmaceutical industry for a highly interactive meeting which was the basis of this report. Over the last two decades we have developed a much better understanding of the fundamental neurobiology underlying pain sensitisation, as well as awareness of psychological and societal factors leading to chronic pain, and we now need to translate that knowledge to prevention and treatment of chronic pain. This meeting and report have helped focus our research priorities for the coming years and emphasise the power of interdisciplinary approaches in tackling chronic pain."

Professor David Bennett FMedSci, speaker at the event, Fellow of the Academy of Medical Sciences, Professor of Neurology and Neurobiology, Head of the Division of Neurology, University of Oxford

 

Participants suggested at the workshop that a network could be set up so that different groups – including people living with pain, scientists, doctors and other experts – can work together more easily. If everyone pulls together in the same direction, and places collaboration with people with lived experience at the heart of their work, it may be possible to break the bottlenecks that are preventing the development of new drugs for people whose lives are disrupted by chronic pain.

 

The report from the 2021 workshop can be downloaded on the right-hand-side of the page.

Find out more about the Academy's position on using animals in research.

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