Pain Train was founded and developed by Soula Mantalvanos, with her husband Theo, after she developed chronic pain following an accident.
The need for Pain Train
While some medical record systems and pain diaries already existed, we didn’t find any of them allowed patients to record the level of detail needed to fully explain how the pain was affecting their lives. These products also didn’t record all the details often required by health care practitioners.
A system was needed to couple together all the aspects of a patient’s pain journey and put them in the driver’s seat to manage their care better. And so, we built Pain Train.
A key aspect of Pain Train is that the data stored in the system is always owned by the patient. And only the patient can decide who it’s shared with.
Not only has Soula brought her insights as a chronic pain patient to the development of Pain Train, she has also used her skills as an artist and creative designer to help graphically display a patient’s pain journey throughout the system.
This means that information patients put into Pain Train is accurately summarised in a way that health care practitioners can glance at them to gain a full patient history. This frees up time in appointments to discuss treatment and pain management techniques.
Watch the video, Why I made Pain Train
Pain specialists have also been involved in the development of Pain Train and we continue to improve the system through consultation with both health care practitioners and patients.
To enable chronic pain patients to record information about their condition and to easily share it with whoever they choose including health care practitioners, carers, family and friends.
To improve the chronic pain journey for patients through providing a trusted and detailed recording tool, which they can use to efficiently communicate with their care team.
Soula’s pain story — the accident and the pain
Soula and her husband Theo own a graphic design business.
In 2007 Soula was working on a design brief for a client when the fit-ball she was sitting on exploded. She dropped to a concrete floor, which has caused her extreme, ongoing chronic pain. If you and Soula were sitting on a bench and you started to hum, the vibrations through the bench would hurt Soula.
Soula has “tried a thousand things” and consulted “loads of experts” to try and solve her chronic pain.
Each time Soula sees a new expert, she has to:
- Retell her story — describing her capacities before the accident, restating the injury’s impact on her daily activities, her lifestyle, and her wellbeing.
- Retell her treatment journey — describing the details of the medical tests and treatments in her quest to be pain-free.
The inspiration for Pain Train
Soula often finds the retelling of her medical history traumatic. She always finds it tedious.
One of the problems of having to explain her story is that Soula — as many of us would — finds it difficult to remember, in sufficient detail, the names of the experts she’s seen, when she saw them, the names of the tests they carried out, the treatments they experimented with, which ones worked, which ones didn’t, the variations on the experimentations, the names of all the medications, the doses, the frequency, etc.
“I felt I had lost my independence, I couldn’t communicate and express my personal experience and that no one understood me.”
Soula Mantalvanos, patient and founder of Pain Train
Soula realised that the key to living with, and overcoming chronic pain is accepting it and taking responsibility (where possible) for its management. For her to do this, she needed the correct system, trust in those systems and, above all, confidence that her personal information would never be used for anything other than to help with her treatment and care.
So Soula came up with the idea for Pain Train. She hopes that by making her medical records system available to other patients it will helps ease their pain journey, save everyone associated with it time and money, and empower patients to manage their own care.