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.

Why?

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.

Well, there’s something to that, we Americans have churned out an impressive stream of life-changing innovations in our time.

Medicine and pharmacology is not our greatest strength.

As much as we might like to think the health care world revolves around our corner of the planet, other countries do in fact excel.

It’s easy for us to think because we come up with some amazing, blockbuster drugs, that we’re the only game in town, and yet a quick perusal of pubmed, or a simple google search reveal plenty of movers and shakers proudly waving a number of different flags.

An interesting irony in this whole debate about rationing care or not is that research money is hard to come by. Yet since most insurers only pay for proven treatments, and you have to study treatments for them to be proven, it leaves us in a quandary.

Countries that have achieved universal coverage through whatever means available do not spend their precious health care dollars on testing and treatment. The entire patient population is available to be their study subject if willing, and their care is paid for.

In this way, not only do their citizens enjoy access to care most Americans will never experience, but they can more quickly recognize, treat, and adapt when new medical problems arise or are uncovered.

Right now most public funding for research is funneled toward the big guns, cancer, heart disease, and little bits to other medical issues. There are thousands upon thousands of other diseases.

How do we research them?

Simple. We don’t.

So by putting all our eggs in one basket, are we the medical rock stars? Well, if you mean we really hit one out of the park on occasion, yes.

If you mean do we have the…. medical infrastructure to understand the depth and breadth of human disease, and the understanding that comes from seeing the forest AND the trees, no. Emphatically, indubitably, no.

By that measure, and the related measures of infant mortality, longevity, and preventable deaths, nearly every country you can think to name cleans our collective medical clock.

Excuuuuuuse me? This is Kaiser, right? Kaiser Permanente? The if we don’t have 20 years of studies conducted by every research institution in the free world then it isn’t true Kaiser Permanente?

Since when did Kaiser (at least here in the Pacific Northwest) become so hostile to research and researchers?

Even the concept of evidenced based medicine worries me. Of course it should be paramount. I certainly don’t want my doctors taking blind stabs in the dark just for the sake of looking busy.

The problem is, we don’t know it all. We have not reached the end of the internet (er, medical research). Not even close. We haven’t even mastered the diseases we’ve been grappling with and funding for decades, let alone those lower on the totem pole.

So what then? What if you have an illness medical science hasn’t been able to research yet? Under evidence based medicine, do we give up? Throw up our hands?

For the most part, that’s been my experience. Symptoms we can’t explain? Oh well. Health problems we can’t name? Too bad. Once I had a diagnosis, it got easier, at least where the major research is conducted. I’m not sure what the difference is between these places and Kaiser, except that in the process of gathering all the evidence for this evidence based medicine, you have to use logic and reason to even get to the point of having something worth researching. Perhaps trial and error, figuring things out, and using similar/related diseases is just second nature.

Why the Kaiser doctors I’ve seen lately see fit to throw up their hands while scoffing at researchers is beyond me.

Of course this tends to be a glaring blind spot in the modern practice of medicine. I’m never sure which shocks me more, the young doctors incorporating old school signs and symptoms into their work, or the doctors who wouldn’t know them if they bit them on the rear, and rely exclusively on lab work to tell them what is or isn’t wrong, and what to do about it. Medicine by the book. Except the book is an infant’s alphabet board book in the face of a universe of complexity that is the human body.

Our knowledge of the human body is still in it’s early stages, and the target of knowing everything we need to know moves further out of reach with each step forward. The more we know, the less we understand. It won’t always be this way, I know, but in the meantime, a lot of people suffer or die on the altar of a slavish devotion to evidence based medicine.

Of course EBM should be the first line of defense. But it can’t be the only weapon in our arsenal.