There are days when I feel like an outsider to the ePatient movement. An alien looking in. I may show up in a list of e-Patients somewhere, but I'm not really a patient, because I get paid to work in healthcare (or so the theory goes). But I feel like a patient, and I act like one. In my day to day work, I think first like one. At the same time, I've been told in no uncertain terms that I can't be, because I work for "The Man", and am a cog in the wheel of the healthcare industry. Others, even more supportive of patients are thrown in the same boat, because they too are part of the system. And God forbid you should be an MD, except with some very good supporters in the wings.
I've seen the healthcare industry be dumped on because it doesn't properly engage with patients. Over the past year I've seen numerous conferences and industry events picked on because the don't respect patients enough in some way. They don't offer patients scholarships, or make the prices affordable for patients, or have patients on the organizing committee, or as speakers. Provider organizations, ACO's, HIE's, et cetera, are all at fault because patients aren't present.
At the same time, I know how to do things on a budget. I know of many organizations that I can join for free, and some for as little as $30 a year that provide me with a great deal of inside track information. Geeks like me don't get to go to every conference then want to. I'd love to go to AHIMA, AMIA or MedX, but they are unlikely to be on a list of conferences I'm approved to travel to (maybe when I become Chief Geek). Yet, I know many ways to get into a conference that don't require me (or my employer) to foot the bill. You want to get into a conference for free, the way the pros do? Offer to speak, and not at the last minute (a couple of weeks beforehand), but 6-11 months before when the call for speakers or papers goes out, and have a good message. Or get someone to fund you to go. If you represent a stakeholder group and they cannot fund you, are you really representing them without any of their skin in the game? Or are you just pretending to? If you have a message to send, and you aren't getting on the right agendas at the right time, whose fault is that? The organizers? Or yours? If you aren't at a conference to provide a message, then you are there to take one back. If the take-away is something you cannot share, should you be expected to pay less for it than anyone else? I'm not so sure about that.
Equipped, enabled, empowered and engaged is the motto. Be it. Don't ask for a free ride, or complain when it isn't given. Find a way; learn the landscape, and engage back. Figure out who to talk to and when to talk to them to be effective. Stop whining, and start doing.
In some ways, I think as an insider, my job is a lot harder. I have to weigh every decision against what it means to take home a paycheck, and still figure out how to do the right thing, in a way that works for everyone. A simple "patient" can argue that they should be supported, and everyone will clap, and nobody above them exists to care about the business impacts of that message.
But insiders like me, we've got to sell that to an audience that doesn't want to hear it, and make it march, and sound like a good idea for them, and the upper-ups. Let's see, what was that message? Oh yeah, "Spend less money on healthcare, and provide it better and cheaper". Back in the day when I sold computers out of a retail storefront, we had an expression that explained how that worked. You see, we sold below cost, but we made it up on volume.
Now, I'm not saying the healthcare industry is right, or that things don't need to change. But what I am saying is that it isn't whether you are an insider or not, or a patient or not, but rather what you do and the message that you send that matters. And if you want to be tagged as a "Patient", go for it, but at the same time, work it like a pro would, you'll be far more effective.