I have been thinking a lot lately about perspectives – struggling really – trying to figure out where my thoughts and ideas fit within the systems that I’m studying.
One challenge that I kept running into was that I am reading (literature reviewing) a lot of information provided from a care perspective – that is from the perspective of providing healthcare. There is a lot of medical literature on how to provide better care or improve population health – and how health literacy is an issue especially for population health problems. But that isn’t the perspective that I’m studying. I am not a healthcare professional, nor a health science or population health professional. That isn’t the perspective I want to study.
I was reading Kleinman (1992) where he mentions of difference of ethnographies as being of illness or care. That made me realize that the perspective that I am seeking is that of illness not the perspective of care. Further, when looking at patient experience literature, I found different perspectives – with different purposes – such as the administration of health care looking at cumulative data around patient experience in order to improve processes and policies related to the delivery of healthcare. Then there are clinicians who look to improve the experience of individual patients and improving “outcomes”. But the perspective that resonated more with me is that of the social scientist that looks at the experience of illness in the broader context.
It is with this broader illness perspective that it occurs to me that an ill person is only a patient in the context of interactions with the healthcare system. Beyond the bounds of the healthcare system, they are a person with illness or an ill person. They are not a patient. The scope of what I’m looking at is of illness experience. I’m in not necessarily trying to change the care experience of others, however, I do hope that my research helps improve the illness experience.