As a person living with a chronic disease, I am very grateful to healthcare. I would not be able to live my life like I want to and like I do, if it wasn’t for healthcare. I am completely dependent of my medications, in fact if it wasn’t for my white, red and pink pills, I wouldn’t be able to move around… at all… Without my rigid medication regimen, (6 different prescription drugs, 6 times a day, in 6 different combinations and with 6 different time intervals…), I would most likely be bedridden and very probably catch some unpleasant problem that comes with a sedentary lifestyle, like thrombosis or pneumonia.
I am lucky enough to have found a neurologist who both believes in and practices Shared Decision Making and this has probably accelerated my path towards becoming an extremely active patient. And for me, to participate as much as possible in decisions about my health, makes me feel more in control, even on bad days, because most of the time I know why I am having a bad day (lack of sleep, too much stress, not enough exercise, take your pick…). And to me this is the outcome of good healthcare, and I also want to claim that this outcome is equal with health.
To me health is an individual state of mind where I most of the time successfully put myself and my current situation into a context of wellbeing.
… and how can you measure that…?
I think this is an extremely interesting claim. I like! It has to do with invisible outcomes as in an ability to separate causes of illness? I have a hand injury, under controlled rehabilitation, but it will take looong time to get it well. It hurts today since it is cold and damp, and I understand why, and that is why I had an angry day. Then tomorrow, my hand does not hurt, but I may have an angry day for some other reason. In your definition, does this matter? That one bad day is due to my “basic” illness and the other is “for some other reason”? Maybe it doesn’t? I accept that healthcare does not take away my pain during rehab, but the hand is on the right track – how would you (or is there no need to) label this “acceptable-level-of-illness-still-within-the-scope–of-good-outcome-since-I-accept-it”
Thank you for commenting, Andreas. If I understand you correctly, you are asking me if I separate my bad days caused by Parkinson’s and my bad days caused by something else. It is a very interesting question, especially since healthcare in Sweden (and probably also other countries) is evaluated using different outcome measures and among these outcome measures, there are separate ones defined for “Health-Related Quality of Life” and “Quality of Life”. Personally, I don’t see how anyone could possibly in a meaningful way separate the two, but that might be because I have not read enough about the topic.