REP 4: THE SECRET SITS IN THE MIDDLE AND KNOWS
Physical activity is a determinant of health, yet adherence to a physically active lifestyle is challenging for those living with episodic health conditions. Physiotherapist-scientists from Sweden have taken a novel approach to tackle this issue for persons living with Rheumatoid Arthritis.
My take on things…
I’m walking along the coast of Newfoundland today. Well, at least I’m doing that metaphorically. My FitBit sent me a message that I’ve earned my “first marathon.” I have walked my first 42 km since I began tracking. It’s finally enough distance to place a pin on my map of Newfoundland at route marker 38 along the TransCanada highway, just outside of St. John’s. Still a long way to go to the Western Coast of Newfoundland, but having fond memories of that part of Canada, I know that it is worth the trip.
If you have never been to the UNESCO heritage site at L’Anse aux Meadows, Newfoundland, I highly suggest the journey. It truly is one of those must-see parts of Canada. It marks the landing of the Vikings in North America over 500 years before Columbus. It was a major scientific discovery made by a Norwegian husband and wife research team in the 1960’s. Up until then, Columbus and his Spanish ships were believed to have made the first European landing in the New World. This research team set out to prove that untrue. When they reached the New World, re-tracing the steps of their forbearers, they landed in the shoals along the northernmost tip of Newfoundland. They weren’t sure what they would find, but a Newfoundlander living in this remote community was able to guide their path. When the scientists asked about a potential site of an archaic settlement that might be in the area, the Newfoundlander directed them to a spot where local children liked to play. It was a settlement that local residents had known of for as long as anyone could remember.
Rather than studying on, they have chosen to study with.
I re-tell this story because it speaks to a central perception that I have about scientific endeavor in the modern era. There is a quote from Robert Frost that turns in my mind, “that we dance around in a ring and suppose, but the secret sits in the middle and knows.” To me, this story of Norway’s discovery relates directly to much of our current science into the barriers and facilitators of physical activity amongst different groups in society.
The status quo has been a model of “studying on” something. That is, objective researchers set in their positivist stance record and observe the behaviors of people, and try to distill why they do what they do. In other words, as scientists, we watch from the outside while the subject possesses the expertise of living with their condition. I was intrigued to read a study recently, produced by a research team of physiotherapists in Sweden, who have chosen a different approach. Rather than studying on, they have chosen to study with. Using an action research paradigm they have worked with patients as co-investigators on a project to develop a mobile app to promote physical activity amongst people living with Rheumatoid Arthritis.
The paradigm of action research has been around for a long time, and has its roots in political change and advocacy. Amongst its foundational principles are the recognition of the heterogeneous forms of expertise that exist in the world. As a scientist, I am an expert in certain methodologies, in the content of research in a limited scope. A person living with a complex health condition is likewise an expert, and this expertise is equally valuable and can enrich the quality and relevance of a research product.
Just like the story of the discovery of L’Anse Aux Meadows, success for the Swedish physiotherapy research team was found through the collaborative expertise and knowledge of both the ‘local residents’ who were able to point out the place of interest, and the scientific team to help bring meaning to the context. Without both sides’ involvement, the larger world would have never known the truth. In the case of the research project lead by Revenäs and colleagues, this collaboration resulted in the design specifications for a novel mobile app called ‘tRAppen’, which correspond to best practice related to behavior change techniques, and patient priorities for peer-support and facilitated self-monitoring.
Although it will take more time for the researchers to translate tRAppen into a functional product available to the public, it promises to offer a new way of interacting with patients in our practice. In Cardiac Rehabilitation, our patients are encouraged to record their activity daily; using tried and tested pen and paper log-books. Each clinic visit, the log-book is reviewed and used to facilitate consultation. The log-book represents an important communication tool that not only allows for positive reinforcements of behavioral decisions, but also, the ability to focus on the detailed issues that a patient needs support to address. The promise of tRAppen is a vision which extends beyond the pen and paper communication of a log-book, and even traditional activity monitors (such as FitBit or JawBone), by incorporating electronic re-enforcement of success and peer-support provided by a community of people with the lived experience of RA.
Exciting as this idea is, I find myself pausing on several questions: How does a tool like this dovetail with our clinical practice? Is it a substitute for our consultation or a supplement to it? Are the physical activity recommendations programmed into its algorithms based on our best available research evidence about RA? If so, how is this information updated with change in our knowledge? Will this tool better assist patients to navigate the episodic nature of inflammatory arthritis? Will it make them more independent and less likely to need a return to therapy? Is this solution affordable so as to make it reasonably available?
These questions, I hope, will be answered in time. For now, this device and the process undertaken to develop it represents a step in the right direction. Working collaboratively with our patients to build tools which support their specific needs as they transition to independent, life-long, physical activity is a worthy pursuit for physiotherapy scientists and clinicians.
Revenäs, Å., Opava, C.H., Martin, C., Demmelmaier, I., Keller, C., Åsenlöf, P. Development of a Web-Based and Mobile App to Support Physical Activity in Individuals With Rheumatoid Arthritis: Results From the Second Step of a Co-Design Process. JMIR Res Protoc 2015;4(1):e22 DOI: 10.2196/resprot.3795
Have you ever been on a clinical or research adventure that has led you to a non-traditional collaboration which ended up improving your practice? I’d love to hear about it.
About Trisha Parsons
Trisha is a physiotherapist, scientist, and faculty member at Queen’s University in Kingston, ON. Her work is in the field of Renal Rehabilitation. As an AMS Phoenix Fellow she is evaluating strategies to develop and sustain narrative competence in physiotherapists in order to support the delivery of patient-centered care for persons with complex health conditions.
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