Saturday, December 20, 2014

Putting Patient Engagement To Work, No. 6B

FasterCures is a DC-based nonprofit whose mission is to save lives by speeding up and improving the medical research system. Its CEO, Margaret Anderson, oversees strategic priorities, helps develop programs, and manages operations.

Let's do a thought experiment: 

Let's make a clone -- call her AMA, Another Margaret Anderson -- whose calling in life, like the real CEO's, is to run FasterCures. Now suppose AMA were to approach FasterCures in search of a job. How might that play out?

I'm fairly convinced, first off, that in spite of everything she has going for her, she wouldn't land the CEO post. The obvious reason being? It's already filled by the real Margaret Anderson. (and any fool knows there can only be one person at the top) No biggie; where there's a will there's a way: AMA could simply resolve to take another job in the organization and work her way up the ladder. A proven-winner-of-a-strategy except one of FasterCures' twenty-or-so positions would have to be open -- at that particular time -- and she'd have to meet all the requirements for it. (Not great at Excel? I see. Project manager cert's out of date? Uh-oh. Red flag.) She'd also have to come off as being more qualified than most of the 249 other applicants to have a hope in hell of landing an interview.

If that didn't pan out? Surely there'd be other avenues available? 

There's the ever-popular "submit your work as an outsider" approach, for example. AMA could write a relevant article; do a real bang-up job of it. In turn, FasterCures might or might not welcome it. It might not or might use it. If it did (use it), however, and she were to ask to be compensated for what the article would command in the business world -- she'd be laughed out of town. If she dared to ask for $50 for it, even $5, she'd have to fight tooth and nail. "We'll have to run it by the Board and try to get Its approval" is the stock reply. 

She might also inquire about working part-time or taking on other small projects as a freelancer. However...

Do you see where this is heading?

Good luck trying to work for a nonprofit you care about. Good luck trying to parlay your know-how or know-what, either for free or for pay, into any sort of ongoing thing. Good luck, in other words, trying to help advance the mission of a nonprofit from the outside. You know, where patients and patient partners live. 

The fact of the matter is either you're on the inside or you're SOL. 

What a shame: 
  • For AMA: the fact that she couldn't do what she's uniquely suited and driven to do. (And here we're talking about the clone of a woman named by Digital Health Post as one of "12 Rock Star Women of Digital Health." Imagine if we weren't talking about a rock star; imagine we were talking about a regular person with even a slightly less-stellar resume or reputation. What chance would she have?) 
  • For FasterCures: the fact that it couldn't take advantage of the mission-specific work AMA could do.  
  • For each and every one of us: "One in three Americans lives with a deadly or debilitating disease for which there is no cure and few meaningful treatment options exist." And yet, in order to be able to help peck away at those, our most pressing life and death problems, you've either got to be independently wealthy or lucky enough to land yourself in one of a very small number of positions in a very small number of nonprofit organizations.
Is it any wonder(?) we get what we've got: Organizations that stay more or less the same and get the same quantity and quality of work done, year after year. The same entrenched interests participating in the same conferences and meetings, year after year. Progress as slow as molasses, year after year...

Who the #$%& made up these rules? Somehow with all the world's resources we ought to be able to do better. 

Our business-as-usual way of (not) getting things done stinks.

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