Research partnership: building the skills to overcome, or live well with, persisting pain via a (fascinating) digital health app

According to Deloitte Australia’s 2019 study, ‘The Cost of Pain in Australia’, chronic pain was estimated to affect 3.4 million Australians at that time. Of these, 68 per cent were of working age. A national financial burden of $73.2 billion in 2018 is estimated to increase to $215.6 billion by 2050. In addition, suicide is two to three times more likely in people with chronic pain compared to the general population, indicating the serious nature of the compounding effects of long-term pain.

Motivated to change this narrative for the better, Australian digital health start-up, Brain Changer, developed an app that trains users to learn the bodily and psychological skills which enable them to recover from, or live well with, persisting pain. The app is now used as part of the company’s BOOST Recovery program. This is an innovative 12-week treatment program that combines rich clinical expertise with an interdisciplinary approach to pain and brain science to teach people the skills and awareness they need to overcome, or live well with, persisting pain.

Our Cognitive Ecologies and Microethnography Labs at Macquarie University recently partnered with Brain Changer on a pilot project to produce user research on their digital health app as part of the company’s commitment to ongoing development of their products and the forward-thinking research that underpins them.

An intro to the Brain Changer app, the Boost Recovery program, and Tina McIntosh’s personal story of recovery that led to her to invent this life-changing tool.

I designed and led the partnership project while working closely with Professor Greg Downey and Emeritus Professor John Sutton from our team at Macquarie and Brain Changer’s founders Edward Grigoyan, Tina McIntosh and Lissanthea Taylor. The project, ‘Digitially training embodied intelligence for skilled recovery from persistent pain’ took a cognitive ecological approach to investigating the day-to-day experience of living with pain. On this view, pain is more than a body and brain-bound phenomenon. It is profoundly shaped by social, cultural, technological, behavioural and environmental factors, among others, and needs to be treated as such.

Our aims were:

  • To understand the fine-grained lived experience and associated skillsets that enable people to make decisions that allow them to successfully manage chronic pain.
  • To describe the ways in which patients are using the Brain Changer app that support or inhibit this.
  • To use this pilot as a proof of concept study which we want to expand on in the future.

Our team identified unique, marketable benefits of the app, current inhibitions to using it as intended (and refinements), and identified two significant areas for future innovation. Our findings were immediately integrated into the product roadmap. As a researcher, this is not only satisfying in terms of direct research outcomes and as a reflection of a strong project design. It is also really exciting in the capacity this project, and company, demonstrate in creating real and lasting change in such a huge segment of the population – nationally and internationally.

It’s amazing what we can do, learn and achieve with the right kind of information and support.

Our approach

The Brain Changer app is designed to train users to learn to control pain, and reduce flare-ups, through a novel system of self-assessment and daily planning based on pain neuroscience principles intended to facilitate positive neuroplastic change.

We used a micro-ethnographic method and conducted semi-structured interviews with the company’s clients and coaches to generate unique insights into user experiences of the app. As someone with a lifetime of lived experience of chronic pain due to a connective tissue disorder, I also used the app for four weeks myself. This allowed a direct embodied understanding of the digital tool, something that proved key to building empathy, rapport and discussing lived experiences of using the app with the company’s clients.

Through meetings between our Cognitive Ecologies and Microethnography Lab teams and Brain Changer staff at key stages in the project, we were able to collectively ground and expand on our expertise in cognitive, embodied processes, skill- and awareness-building and pain science, to mutually explore potential future innovations and keep each phase of the project focused on Brain Changer’s most immediate interests and needs.

Pain can rob people of so much joy, interaction and the ease of familiar routines and replace these with fear, isolation and worry. Small actions that build ‘safety signals’ into otherwise stressful activities can help regulate the nervous system and stimulate positive neuroplastic change.

Our hopes for the future

We hope to continue this research in one form or another – whether that’s through future collaborations with Brain Changer, through securing additional funding to extend and expand on these topics and interests, and/or through adapting the methods used for this project to conduct user research from a cognitive ecological perspective with other interesting organisations.

If you’d like to discuss any of these options, have interesting leads worth pursuing, or would like to do what Brain Changer did and simply get in contact for a wide-ranging chat to explore overlaps and interest, please don’t hesitate to get in touch.

If you are currently struggling with the day-to-day impacts of persisting pain, more information about accessing the Brain Changer / Boost Recovery program is here. The program is used in several workers’ compensation settings, so that could be something worth exploring if this is your situation.

Different things suit different people at different times during complicated health or injury journeys. I often advise people to keep information about additional routes to recovery in a metaphorical back pocket to draw on in a time of need, or when they are ready to try something different.

Based on my own experience using this app, I’d say that while I definitely would have benefited from this tool and associated education earlier, it’s never too late to stimulate positive neuroplastic change and learn about other life-changing scaffolds to doing more of what you want to, more often, and with more, joyful, ease.

Each small step adds up

Images: Unsplash