Before I can begin to explain what I mean by the fable that is our excellence in research, I have to share an anecdote.
A family friend who happens to be fantastic at helping people see the bigger picture (literally, it turns out) once shared with me the following:
He used to have this big picture on his office wall. He would hand people a piece of paper with a pinhole in it, and ask them to look at the picture. He would ask them what they saw. Inevitably they would describe a shape, a color, a shading, some infinitesimal detail. He would then ask him what it was a picture of.
Talk about your “ah-ha” moments.
We humans often make the mistake of thinking that because we can see some tiny portion of the overall picture, that we actually have a freaking clue about what’s going on.
The interesting thing about medical research, is the vast majority is spent on the big diseases, cancer, heart disease, diabetes, AIDS, Alzheimers. Then there are the estimated 6,000 “orphan” diseases, which might get 1% spread among them. Then there are the thousands of diseases somewhere between major leagues and orphans that share another tiny portion of funding.
This means we do make some major discoveries in the big diseases. That said, how long have we been fighting cancer? The next big breakthrough has always been a decade away, but decades later, cancer still kills. Some forms can be managed, some are just as deadly as they were 40 years ago.
How about heart disease? Cholesterol from diet vs cholesterol from food, cholesterol as marker for heart disease, cholesterol as marker for inflammation, CRP as predictor of heart disease…. on and on it goes. We still don’t know very much. Often the latest “knowledge” is trumpeted from rooftops only to find 10 years down the road, the data didn’t mean what we thought it meant.
Unfortunately medical research in the US is looking at a huge picture through a tiny pinhole. Everything is sliced and diced into it’s smallest parts. This is useful for removing variables from data, but it is also useful for removing perspective. We can’t see the forest for the trees.
This is one area where the US fails miserably at medical research.
What if by researching the big disorders this way, we’re looking for the symptom, when we think we’re looking for the cause? What if there’s a greater cause, and because we look at each individual disease instead of disease processes as a whole, we’re missing the boat? What if we could have cured cancer, heart disease, diabetes AND Alzheimers 20 years ago?
Here’s the other issue: it’s not as simple as get a grant, do some research. That researcher has to work somewhere. The building ain’t free. Nor is the spendy equipment. Nor are the other experts the researcher must collaborate with in order to understand findings outside their area of expertise. Nor are the test tubes and bandages and vaccutainers and gowns and so on and so on.
This article is a great snapshot. Take the comparisons made, and look at the cost of things not specified. In the UK, the cost of caring for the patient while doing research is covered. All those supplies are already paid for. The researcher is paid for. Here, not so much. Insurance might cover it, except the vast majority of policies don’t cover research. The research might be funded (see above). You might be a millionaire and pay for your research experience yourself. So you really have to increase UK research expenditures to include the cost of merely caring for the patient who is being studied. I imagine that might well close the gap, or narrow it significantly.
However the most important thing to note is, by covering every patient, by each patient being forest, not just trees, you get a better overall clinical picture. You get to study more people, more diseases. As long as we are on a fee for service model, this is how research will work in the US, because we’ll never have enough money to adequately fund every disease. As long as we deem some diseases more important than others, we’ll only ever see the pinhole view of the human body.
When we see single diseases through that pinhole, we may be missing the element that connects each of those single diseases, and therefore the opportunity to cure many diseases, faster.