It was summer of 2010 in Australia. I had been working hard in the garden one Sunday afternoon. Feeling the need for a little mindless entertainment I suggested to our then 14 year old that we might rent a sci-fi movie. It was around 7pm and getting dark. My son jumped into the car beside me and we took off toward the video shop. That’s when I noticed that the car headlights were far too dim. I turned on full beam- but it didn’t help. I ranted for a good five minutes about how difficult it was going to be to get a mechanic to look at the car so close to Christmas. I was also a bit put out that our teenager was showing no concern for my predicament. At this point he quietly reached across and took my sunglasses off my face.
There. Problem solved dad.
I learned something that day not least what it would cost me if that story was not be retold to his brothers.
I love the work of Deana McDonagh and Joyce Thomas, especially their thinking on empathic design. Deana and Joyce begin their sessions on empathic design by inviting participants to try on their designer glasses- the ones that demonstrate what it must feel like to have tunnel vision. They’ve written about it in the Australasian Medical Journal. I keep those glasses in my office to remind myself and visitors of the valuable insights they offer but also as a treasured momento of a fun workshop generously organised by a brilliant team.
Their work came to mind later when we were investigating the attitude to self-management of a condition that is progressive and for which there is no cure. Patients and doctors in an Asian setting were interviewed. We recorded poignant stories about the impact of this condition on people’s lives- resulting in social isolation, self loathing and a need to feel supported by a health practitioner:
Both patients and doctors were against the adoption of self-management strategies. This is contrary to recommendations for the management of COPD by many studies and guidelines. However, another study has similarly shown that self-management skills were not rated as important by patients. Furthermore, the psychosocial impact of their disease such as fear limited their ability to manage their own symptoms. A lack of knowledge may also contribute to their dependence on doctors and health care providers.
In reality, patients have to conduct self-management daily and it is not feasible for physicians to provide all of the management needs that patients have during their day-to-day lives. Therefore, self-management remains an aspect of overall COPD care. However, it should not be the only focus and future interventions should also examine ways to improve access to health care.
On reflection we noted something similar with patients in Australia. Those who had an established medical condition were much more likely to ‘trust’ their doctor than those who were not currently unwell or those from higher socioeconomic groups. Innovating requires the ability to see people as heterogenous having very different perceptions on the need to be in charge of their own health, perceptions that are liable to change with circumstances. I also wonder if policy makers consider what it must be like to implement their big ideas from this perspective:
Picture by Redfishingboat