Health Care and OSNs

I'm working on my thesis right now. Rereading and editing our Persona paper, I reached the section about inherently private online social network (OSN) applications. I remember at the time thinking that sharing health information with doctors through an OSN was a weak example.

Of course, that was before I got leukemia. Now that I'm much more familiar with the health care system, I feel like this is the best reason for a Persona-like OSN. The. Best. Reason. Dealing with multiple doctors, health insurance representatives, and a pharmacy often reminds me of that old game: "Randy, would you please tell your brother that I'm not talking to him right now?" This is a more-or-less real example of how it works.

Dr. #1: "Randy, tell Dr. #2 that I said you can't have your surgery next week because you were sick last week."
Randy: "Why don't you tell him?"
(...Silence...)
Randy: "Well, you'll at least tell him what medications I'm on, right? He needs to know that."
Dr. #1: "No, you should do that too."
Randy: "Will he be able to do his job correctly based on second-hand knowledge given to him from someone who isn't a medical professional?"
Dr. #1: (flippantly) "Sure, why not?"
(...Pause for dramatic effect...)
Randy: "You know, I'm a fairly smart and organized person; how in the hell do your dumber patients manage to navigate this system without causing themselves serious harm?"
Dr. #1: "Sink or swim? Don't forget to go to radiology and get some x-rays; you'll need to take them with you when you see Dr. #2 next. They'll be expecting you."
Randy: "No they won't."
Dr. #1: "They will if you call ahead."
(...Randy shambles over to radiology on his broken hip...)
Receptionist: "Do you have a prescription from Dr. #1?"
Randy: "No, but he's in this same building. Shouldn't it be in your system? Can't you just call him?"
(...The receptionist stares at Randy as if he's from another planet...)
Receptionist: "If you don't have a prescription from Dr. #1 insurance won't cover it."
(...Shamble, shamble, shamble...)

OK, so, I'm being a bit unfair to the doctors and the receptionists and the nurses here. My doctor's not really a jackass like I'm making him out to be, and he's just doing his job filling a role in a broken system. Blaming him isn't going to change anything. As a wise man once said, "You're treating a symptom, when the disease rages on, consumes the human race. The fish rots from the head, as they say, so my thinking is why not cut off the head?" Unfortunately, the health care system, like other broken systems (campaign finance, the tax code, Congress) in America these days, seems to be more hydra than fish: the more heads you cut off, the more that take their place.

In any case, the primary barrier to better privacy controls in OSNs that might enable health care collaboration is not a technical one but a social or business one: how do you pay for it and how do you convince people to use it? I wish I had the answers to those questions, but right now all I want to do is finish my thesis and get a job.

Getting a job immediately after I finish my PhD in May is absolutely crucial: because of DOMA, I can't be included on Ted's health insurance so I will need (possibly in the literal, will-actually-die-without sense of the word) to have some sort of health insurance of my own. Kind of takes some of the celebration out of the fact that marriage equality is coming to Maryland very soon, since it doesn't do anything to change DOMA. I'm sure that President Obama's going to take care of that during his second term, but I don't have the luxury of waiting for that. I remember when I was younger thinking that politics really didn't affect me much and so I didn't care much about it. Suddenly, I feel like so many of the big issues of the day -- marriage equality, health care, government spending -- impact me specifically. Thank goodness I'm not also an immigrant woman... I might explode from the political pressure, or even worse, get featured on CNN in a fluff piece.