Community Capitalism to Fund Medical Research

by Thomas C. Veatch

Have you noticed that a lot of medically relevant decision-making is dependent on vague, poor, old, or small studies and information? Or on sales pitches of profiteers? Have you ever had to make an important medical decision, to choose one therapeutic option among several, with consequences from small to enormous? Did your physician say that no-one has a study to quantitatively answer that particular question yet? Was an educated guess the best you could hope for? Or worse, a stab in the dark? Or even worse, an enthusiastic proposal from a salesman? Or did you really have plenty of good data to make a confident call?

Really, didn't you wish that there was a data based decision tree you could rely upon in order to make an optimal decision? You could see option A and option B, so many people in your category of symptoms tried this one and out of them X percent did well, and so many people tried the other one, and Y percent did well, you could see what the pattern was and make an informed decision.

Simple!

But where is that data? Hidden in the medical literature? Maybe.

The way that data gets there is that the NIH or the pharmaceutical industry has decided to pay someone to set up clean experiments and run them, collect and present the data, and publish it only after grumpy academic competitors rake it over the coals to see that it's not a bunch of self-serving BS.

We like those peer-reviewed findings, they're quality, but they don't include many of the questions we want to know about.

A lot of it is dependent on the motivations of big pharma, because that's where the big money comes from to do big amounts of research.

But naturally what they want is to make money. They want to come up with something patentable, then prove it won't kill you (Phase 1 and 2 trials) and then prove their new patented whizbang drug is at least 0.01 percent better than some previous therapy in some context or population or other, no matter the cost (phase 3), then they can sell it like crazy to everyone they can think of charging as much as they possibly can. They aren't really all about finding out the health ramifications of detailed diet choices, or how many gun-related deaths occur in the US (certainly governmentally unfundable, it's almost an illegal question, in the USA), or if water filtered through fire ashes and sand can be as safe as distilled for third world water users, or if some new snake oil works or not, or if pingpong is better exercise than golf, or anything that doesn't directly make somebody lots of money --- research supported. Why would they invest in it? It's not good for business!

But we are the people making the decisions, and bearing the cost of the consequences.
When it's our own decisions that we are making, we would actually like to know. We care a lot about decisions about medication or surgery, about work and play, about food, all kinds of things. It makes a difference to actually know what happened to others who faced the same situation and made one of these choices.

What are those facts? What would the facts show us if we properly, carefully, collected and observed them? What would they tell us about the options we are deciding between?
It is worth something for us to know.
It is worth more than zero, for us to really know the actual truth, about a million medically relevant choices most of which have nothing to do with income to Pfizer or Johnson and Johnson.

And we might be willing to pay for information bearing on a choice we have to make.

In Community Capitalism, there will be a Medical Questions section, where people can ask questions, or subsume their questions under previously asked questions, and put money down to crowd-fund the research that will answer their question with facts.

Suppose someone thinks they want to lose weight, but they hate, and will not long-term participate in, boring exercise on treadmills, machines, and swimming or running lanes, but they love competitive ball sports. Let's put "Long-term exercise with pingpong 2-3x/week versus weight-loss" down for a study, and throw down $100. Wait a year and lo and behold a lot of people are bored and fat and have money to support their question, and there's $10,000 or $100,000 in the pot for a study that shows how much weight is lost over time by playing pingpong 2-3x/week. Suddenly there's a grad student who wants to write up the experimental data collection procedure, and a statistician who is certified to know how to analyse the data, and a group of seniors at the community center who will fold letters and mail them to all the members of the USA Table Tennis association to find out their self-reported weight before and after starting to play pingpong for a few years. Suddenly there's a result that says the average permanent weight loss of an adult-onset table-tennis player is, say, 7 pounds with a standard deviation of 20 pounds. And there's detailed patterns in there that make clear that you don't even have to try and you'll probably lose 7 lbs, and if you try you could lose 40, just adding pingpong to your life. A conclusion like that is something science and data could potentially prove, and it just requires the energy to do the science. And where does that energy come from? From the desire of the people asking the question, and the money they put down, and the desire to work and get paid by the people doing the work. It's capitalism in a way, and it's communitarian, in a way. Look, all those people get paid! They were eager to do it and to do a great job doing it. The crowd-funded study got done as soon as the study budget matched up with the accumulating pot, and from now on we have a pile of great data that suggests you can be excited and thinner instead of bored and fat if you get your butt down to the community center and set up a pingpong table a couple times a week. Now is big pharma really going to pay for that? I don't think so.

But are you willing to put down $1 or $10 or $100 to decide how to live long and prosper instead of die early and bored? Maybe! Look, it doesn't take everybody to contribute, it just takes enough. Plenty of people can be useless freeloaders, it just takes enough people who have a little bit of community spirit, you might call it wisdom, and prosperity, and generosity, and a crowd in this wide world of billions can accumulate to solve any and every problem. If it matters, it matters to people, and people will want to contribute to solving it. So nay-sayers and freeloaders get out of the way, and the rest of us let's all push to make this concept into reality, into an easy way to make a better world for everyone. It's a simple matter of imagination. And then a simple matter of money. And then a simple matter of work. Nothing we can't do together.

How to actually implement it.

 

Copyright © 2017 Thomas C. Veatch All rights reserved.
Last Modified: January 7, 2017.