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.
Keith - while I understand where your post comes from, and the point you are trying to make, I think you've missed out on two major points:
ReplyDelete1. The concept of "e-patient" is not about attending conferences or maximizing professionalism. An e-patient's goal is about getting the most he or she can from the healthcare system by doing what it takes to either use what exists in the system, or work around the barriers. It's a very singular, personal pursuit that has nothing to do with travel or conferences.
2. Among those of us e-patients who have taken it a step further and feel as if we have something to say to improve the system - yes - we have to ask to be invited to the table. It has only been in the past year or so that we were even recognized by many organizations as important enough stakeholders to be invited! Imagine that. And believe me, we still have a long way to go.
I wish it was so simple as offering to speak. The cost to me as an epatient speaker of "offering to speak" isn't just the lack of any respect that my contributions to the conference aren't just as important as any other (paid) speaker. It's also the cost of travel (from where I live, usually a minimum of $800 to $1000), plus the cost of my time to not only do the traveling and speaking, but to craft my messages so they'll be heard and understood - and hopefully embraced, too. As a businessman, you know that time = money. "Offering to speak" could cost me thousands of dollars for each offer.
Most providers and industry employees (I suspect like you) - have travel and education budgets for continued learning. They are receiving a paycheck from somewhere that supports their ability to share their messages. It might come from the conference organizers, or it might come from an employer. But it doesn't come from their own pockets. If it did, no one would ever show up at conferences.
You are right that there are people who simply complain and don't seem to do much to improve their chances of being invited. And as you suggest, others of us have risen above that. I have a busy speaking schedule, accept an honorarium 90% of the time and am always reimbursed for my travel. I don't have an employer to foot the bill - I'm just "me" - an e-patient with a message that providers and industry people realize has an interesting and actionable message.
But I had to, in effect, claw my way to where I am. And it wasn't by spending my own travel money or speaking for free.
Trisha Torrey
Every Patient's Advocate