Beating chronic pain: the need for teamwork and listening to people with lived experience
02 August 2023
Versus Arthritis teamed up with the Academy of Medical Sciences, the British Neuroscience Association, and the Physiological Society to discuss what needs to be done to speed up the development of new treatments for chronic pain.
This workshop highlighted that people who have lived experience of chronic pain should be at the heart of research partnerships, so we can tackle the common and complex challenge of chronic pain.
What is chronic pain?
If you have a musculoskeletal condition, such as arthritis, you probably experience a range of symptoms, such as extreme tiredness or stiffness in your joints.
But we know that the most common symptom is often pain.
Chronic pain – pain which has lasted for more than three months - affects between 18.4 million (34%) and 28 million people (43%) in the UK.
And about eight in every ten people (84%) with chronic pain in England say that at least some of their chronic pain is in the neck or shoulder, back, limbs, arms and legs, or hands and feet – all areas where pain is most likely to be musculoskeletal.
Why is this workshop important?
Finding new treatments for chronic pain is difficult. That’s because pain can affect many different parts of our body and it’s often not clear what the cause of the pain is.
On top of this, chronic pain isn’t the same for everyone. One person’s pain experience and causes of pain may be different to another.
To complicate this more, the current treatments available aren’t effective for lots of people living with chronic pain.
This workshop brought together a wide range of people who experience or are tackling chronic pain to discuss what can be done to improve the situation.
What were the main conclusions?
The workshop focused on the challenges that researchers face when developing new treatments. It also looked at how research into chronic pain could be improved so we can make the breakthroughs we need to help people who have chronic pain.
Many drugs that are used to treat chronic pain have been developed using animal models. Often used by researchers, animal models are animals that mimic a disease or symptom found in humans.
However, sometimes treatments developed don’t work well for patients or have bad side effects. So, we need to continue to work to improve how well our animal models reflect the human experience.
The workshop proposed that future studies should focus on working with people with lived experience of chronic pain, so they can get a clearer picture of their symptoms and better understand the causes of their pain.
This could involve studying their:
- genetics
- biology
- life history but also their emotional experiences.
This would create a wealth of knowledge which would allow researchers to develop animal models that are more similar to human pain conditions.
“Pain really does affect everything – sleep, mood, sex, work, family, friends. Unless research captures and investigates pain holistically, we’ll stay where we are now, with few effective treatments and a partial understanding of what’s going on in people’s lives.”
Future drug development should focus on groups of patients who have similar symptoms, and whose chronic pain has similar underlying causes. People who took part in the workshop also suggested different ways we can put people with lived experience of chronic pain at the heart of research.
These included:
- understanding chronic pain in people and then working backwards to inform research studies
- better understanding of the different types of chronic pain that people experience, and the different causes behind these types of pain
- better understanding of the psychological factors that are important in people’s experience of chronic pain
- making sure that clinical trials for new treatments measure the outcomes that are relevant and important to people with lived experience of chronic pain
- working to make sure that recruitment for clinical studies reflects the diversity of people living with chronic pain.
How will the findings benefit patients?
The report from this workshop suggests that there needs to be greater engagement with people living with chronic pain so researchers can better understand their pain and develop more effective treatments.
People who took part in the workshop suggested that a formal international network of scientists would be useful in enabling everyone to work together to drive forward progress in chronic pain research. This network could include representatives from industry, regulatory agencies, academia, healthcare, carers, and people living with chronic pain.
It is hoped that by working closer together and placing people who have lived experience of pain at the heart of research it will make it possible to overcome the bottlenecks that are preventing the development of new drugs for people living with chronic pain.
“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.”
How to get involved in our research
Our research partners and volunteers help us to bring real life perspectives to our research activities.
Find out more about how you can help shape our research or participate in research studies on our website or email us at: patientinsight@versusarthritis.org
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If you would like to talk to someone, you can:
- Call our free helpline on 0800 5200 520.
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