A year ago I was diagnosed with kidney failure and informed that I would need a kidney transplant within the next 2 years. Last summer my kidneys took a turn for the worse after a salmonella infection and I became dependent on dialysis to keep me vertical.
I am still on dialysis and waiting for a transplant and despite what one might expect: life is fairly close to normal. I eat, sleep and go to work and I still shake my fist at all the orange people on my TV.
There are two main kinds of dialysis. Hemodialysis, in which the blood is pumped out of your body and circulated through a machine. This requires you to go to a hospital, and to get hooked up to the machine is a bit of a ceremony since we are talking about pretty direct access to your bloodstream.
Then there is peritoneal dialysis, where a fluid is pumped into your abdomen through a small tube and dialysis is performed by creating osmotic pressure and sucking waste (and excess fluids) out of your blood through the peritoneal membrane. With peritoneal dialysis you walk around with ~2 litres of dialysis fluid in your peritoneal cavity and this fluid is exchanged 4 times per day. You drain it out and you put new fluid in.
For the most part I can live a normal life.
However, that was just the background. What I really wanted to talk about was something else. You see, with peritoneal dialysis there are certain practical problems that need solving. Since I need to exchange fluids every 3-5 hours, I need to have bags of fluid with me wherever I am. 8kg of fluid per day. And this fluid has to be heated to almost body temperature before I can put it in my body. (I've tried putting in fluid at room temperature. Not pleasant). I also need some supplies and equipment to do the exchanges. Disinfectants, face masks, clean tissues, Iodine caps for the catheter, an IV-stand for the bags, a scale etc. Travelling with all this gear is ... interesting.
Finally, the actual exchange can be rather painful. As you drain the fluid the catheter might attach itself to various bits inside your abdomen. Imagine a vacuum cleaner -- now imagine dangling your testicles in front of it. FWOMP! You get the picture? This is sort of what happens inside my abdomen when I empty out the fluid. It is curse-out-loud painful.
Naturally this inspires some measure of creativity.
I prototype stuff to help me cope with this. For instance right now I am building a portable dialysis fluid heater. I had a look at the ones on the market and they were all too bulky and too expensive. None of them would be an improvement over the heater I have now.
Not a lot of people prototype and build their own gear. And a lot of health professionals are very interested in what I do because they have other patients that might benefit. In fact I've been asked if I can give demonstrations on several occasions -- and I will when things are in a safely usable state. But I keep hearing people say: "you should patent it". And every time people say that I cringe a bit.
I know that most people do not really think about the role of patents in research, innovation and product development. For most people patents are this magic thing that protects your idea and makes you rich. And I don't blame them. I know intelligent people who think that patents are actually worth something to a private person and that they play a positive role in society. (I know even more people who think society can go fuck itself as long as they can get rich). The original intent behind patents was good: to share knowledge and to give the inventor a head start. But that was a very, very. very long time ago.
Patents do not play that role today. Patents are not a source of usable information for engineers and inventors: they are poisoned wells that you cannot drink from. Anyone who says otherwise cannot possibly have worked for any company that is embroiled in, or runs the risk of being implicated in, patent lawsuits.
Nor do I think people have any realistic concept of what it would cost to license all the patents that would apply to any non-trivial product, world-wide. Because companies don't do that. Go to a consumer electronics store of some description. Almost everything you see is an act of patent infringement. Every little detail on every little device is an idea that someone claims to "own". And for the most part, the intellectual property isn't licensed.
Patents do not provide the ordinary inventor with any sort of protection. A patent is worthless unless you have lots of time and money. If you have a patent and I have a pile of money, my pile of money wins over your patent.
But even if we pretend that patents have value for society: why would I patent these things? Why would I want to contribute to keeping solutions away from people who need them? And more importantly: why would I isolate myself from the help I could get from others?
When I design gear I spend a lot of time thinking about whether other people can duplicate what I do. It isn't enough that I manage to design and build something: I want other people to be able to build what I build. That means it has to be relatively simple and it has to be cheap.
One example is an automatic valve system to assist in draining that I have been tinkering with in my spare time. I'm not sure I will finish it before I get transplanted, but it is an interesting problem and I enjoy figuring things out and come up with solutions to problems. For the system to work I need relatively precise measurement of the flow rate. If I do this by weight I can make do with very cheap components (a kitchen scale, a microcontroller chip, an LCD-display of some sort, some buttons, a high resolution ADC -- total cost perhaps $100-$150). I could use ultrasonic flow measurement, but then the cost of the sensors alone jumps by an order of magnitude.
If I had ultrasonic flow sensors I could miniaturize the whole system to where it fits in your palm, and if I ask nicely, I bet that the manufacturer would give me the sensors for free. But people who try to build the same system would not get them for free. So that isn't really a viable route.
You may think that I do this out of pure altruism. Sure, I'm not above admitting that there is a component of that. But there is also the fact that if I can interest other people in what I do, I directly benefit from it. If other people make suggestions, develop my ideas, add their own, that helps me directly. In fact, it has already helped me a lot.
I cannot imagine a scenario under which I would want to patent anything I designed to help dialysis patients. I'd be delighted if someone turned my ideas and designs into commercial products -- even if I don't make a dime. If they do they deserve whatever profit they can make of it.
Of course, what I should do is to publish my notes so that at least there is prior art if some patent troll were to bully others with bogus IPR. I have been too lazy in jotting down what I have learned, which solutions I have tried, which I have rejected, why etc. I hope to do something about this. Possibly by publishing a blog on the subject. I guess such a blog would have a pretty narrow audience though. Perhaps I can spice it up with fashion tips and long descriptions of how personal grooming habits :-).