Evidence-Based Medicine Part 2: Who Decides What Gets Studied?

In Part One of this post I discussed the general background controversy of evidence-based medicine (EBM,) and some examples of how that is playing out in the pelvic pain world.

In Part Two - that's this one! - I bring up a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three I'll break this mess down and discuss what it all means for you and the health of your lady parts.

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The big ol' red flag: 

Who decides what gets studied?

Think about that...

It's complicated right? Someone has to get an idea, they have to convince other people it's a good idea, they then have to convince still more people to give them money to research this idea, and then after that study comes out, well, one study doesn't mean much, so lots of other people have to jump on the bandwagon and get money and research the same topic until there are hundreds of studies, most of which have the same result, at which point we have a body of evidence.

What could possibly be imperfect about this system? Some roadblocks:

(1) Problem Identification Bias: If someone is not aware of a problem, they cannot be expected to solve it. (This is why v-pain usually doesn't make it out of the gate.)

- You need demand to get supply.

(2) Idea Generation Bias: Good science comes from good scientists, who have been trained in western scientific methodology and know a lot about western science and western medicine. But they may not know anything about other healing traditions from beyond their cultural experience and training, thereby cutting them off from potential avenues for research. 

- Scientists aren't going to propose solutions based on something they don't know or understand.

Both the genesis of the question and the proposed solutions are inherently biased, therefore worthy problems and worthy solutions may never make it past this point. What happens to the ideas that do?

(3) Salesmanship Bias: To convince others to join them and give them money, scientists have to have clout, they have to be able to sell their ideas to other people. Just like anything else, there's gonna be horse-trading, office politics, personal and institutional agendas, competing financial priorities, personality differences, and a whole host of other human realities at play here. 

- The road to funding is paved with politics. 

(4) Funding Bias: Studies are expensive. The largest funder of medical research in the world is the National Institutes of Health (NIH,) which is funded by the US government. Pharmaceutical companies spend more than any other industry lobbying... the US government. How science gets funded is a post (actually, a library of books) in and of itself, but for now, you do the math.

- There are many agendas other than a patient's well-being that determine what studies get funded.

(5) Publication Bias: The study has to get published in a reputable medical journal. No one along the road to funding will greenlight a project that has little chance of publication, for whatever reason. 

- The road to publication is also paved with politics. 

The initial idea had to go through a lot of hoops in order to complete one study, but EBM requires many high quality studies.

(6) Repeat Studies Bias: Where's the professional acclaim and advancement for researchers, funders, or publishers to churn out endless studies looking at the same thing? No one gets credit for replicating a study for the 700th time, even though mundane grunt work is the foundation of solid evidence. 

- Ideas may not get the follow-through necessary to create a substantial body of evidence.

In short,

Equally good avenues for research may not get equally good support.

Even when a great idea makes it all the way past step (6), it still needs to be taught to doctors and translated into clinical practice before it can actually reach patients.

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We as patients and medical providers need to discuss and understand the benefits and limitations of evidence-based medicine. It is not a panacea.

On the winding road outlined above, it is easy to see how problems and solutions worthy of research can get overlooked or left on the cutting room floor.

And yet people still have to make medical decisions regardless of whether or not research exists.

In Part 3, we'll discuss how to do just that.