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 Project manager cert's out of date?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.

My Two Cents_01

I like to believe that we -- each and every one of us who'd like to make a bigger dent in the challenges we associate with CP and other neurological disorders or conditions -- could be moving a heck of a lot faster and having a far greater impact than we are now. 

The crux of the matter? Our obstacles are enormous but we're relatively "tiny up against them."* 

To me, the key question is: 

Can we become, or behave as if we were, bigger up 

against our challenges? 

I believe we can. 

I actually have something of a game plan that I'd like to share by way of short posts like this one -- at least one per day until the end of (this) National Cerebral Palsy Awareness month.

I've chosen "My Two Cents" for the series title 'cause that's what my ideas-in-isolation would likely bring on the open market. But, if other interested people -- you included -- were to add their two cents to it, who knows? Maybe we could cobble together something truly valuable and find ourselves on the fast track to actually getting somewhere? 

That's my hope. 

My motives, ultimately, are selfish ones. My daughter has CP. Like many of you, I have a very real and insistent stake in what "each and every one of us" is able to accomplish.

*phrase and concept borrowed from Dan Pallotta

ROUND EIGHT: My Rx For CP

Not that anyone gives a hoot...

Here's what I believe we could and should generally be doing to KO CP: 

ROUND EIGHT: Everything's Peachy

Here's what I take away from 99% of the online communications I see from organizations operating in and around the cerebral palsy / neurological disorders / brain research / special needs arena: 

Everything's peachy.

You had a great 2013. 
You're right on track for 2014. 
You know just what you're doing. (You're "collaborating.") 
Sure you could use a ton of money -- for what, you rarely say -- but outside o' that?

Peachy.

If I'm reading you correctly that means:

• Your operations are going like gangbusters and need no improving. Your processes are smooth and efficient. As for your programs, products, and services? They're all grand slam home runs.

• The dozens of projects to which you've committed are being broken down into smaller task-chunks and getting checked off -- on time, in every department, to great effect. (That you selected the right projects based on the right strategies in the first place goes without saying.) 

• You're adequately addressing all the "look into" things you and your staff have been hoping and meaning to explore or pursue but haven't had the time to. 

If that's what you're telling me, I'm sorry but --  

I don't buy it for a minute. 

For a variety of reasons. Not the least of which is the fact that so few organizations are as well oiled or productive as they could be. 

I believe you could use all kinds of help. 

Curiously enough, though, your communications never say so explicitly. You show no signs you're in the market for any of the kinds of help I alluded to above. You never say you don't know. You never acknowledge you need more expertise or resources. You never discuss things that flop.

You never let 'em see you sweat. 

That's par for the management and organizational-communications course historically. Remember earlier web sites? 100% PR-filtered and one-way. ("This is what we decided to say about ourselves after we had a chance to deliberate.") I'm not surprised that many of your sites still are. But the fact that I'm seeing the same sorts of patterns with regard to your blogs and Facebook pages concerns me.

How come?

Well, I tend to go along with an observation Dan Pallotta made in his much circulated TED speech from March of 2013, that "Our problems are massive in scale [and] our organizations are tiny up against them."  

Our problems are massive. 

Current conventional CP therapies offer only a 4-10% average gain for any particular individual.* One in eighty-eight children is being diagnosed with autism. We can't afford for our organizations, individually and /or collectively, to be tiny up against our challenges. Not everything's peachy.

What's social media got to do with it? 

I wouldn't go so far as to say that our social media approaches and practices are keeping us tiny. I would say, however, that they're not doing much to make us bigger up against our challenges. And I believe they could.  

And must.

What makes social media special is its two-way-ness. The ability to use it to "engage with" (as opposed to "broadcast to") others. Especially w/ lots of others. A general formula that seems to be emerging for using social media to advance one's mission? Help others help you. Improve your performance by helping smart and passionate others improve their own performance.

Practically speaking, the idea is to (1.) put your true organizational self out there, (2.) tell the world what, specifically, is important to your future success, and (3.) invite people to apply their talents, creativity, and skills to it. How to do these things, e.g., what inducements to offer would-be participants, depends on you and your context. 

My response /call to action:

I'm experimenting with something that could conceivably help your organization "open itself up" to additional help from the outside. Via my Parents2Projects Facebook page and "Calls 2 Action" map (below) I'm trying to get the word out to potential workers / helpers / service providers that there's much important work to be done in our community. 

You may be able to help your organization by telling me what help you want or need. Tell me about projects, would-be projects, or specific tasks you could use some help completing. From the profound to the mundane. Of any size or scope. Shoot 'em my way and I'll see what I can do to connect you with low- or no-cost "people power" to get them done. Please contact me here, or through Facebook.

What's there to lose? Who's to say we couldn't drum up a critical mass of participants and amplify our productivity and impact beyond our wildest dreams?

Create your own mind maps at MindMeister 

*per Dr. Iona Novak from CP Alliance in Australia

ROUND EIGHT: Perturbed

An open and off-the-cuff letter to anyone who's "in the know" about the innermost workings of any of the following: 

• One Mind 4 Research 

• The New York Stem Cells Foundation 

• Institue for Community Inclusion 

• The Allen Institute for Brain Science 

• American Brain Coalition 

• Cerebral Palsy International Research Foundation 

•  American Association of People with Disabilities

• Weinberg Family Cerebral Palsy Center* 

*  *  *  *  *

Dear Sir or Madam:

Whenever I visit your organization online -- either at your site or on Facebook or Twitter -- a part of me gets perturbed. 

Irked. 

The reason being? 

I'm either a constituent or would-be constituent of yours. And you're not asking me to help. 

You're not: 

• gathering demographic info about me, having me take surveys, funneling me into focus groups, or designing your processes around me; 

• building online platforms that might enable me to help you address your key challenges and opportunities; 

• taking advantage of whatever professional skills I may be able to share (for little or no remuneration) in service to your cause. 

What you are doing, on the other hand, is asking for money. And telling me about your accomplishments. 

Me and at least 14 million others like me.**

What should I make of all this? My getting perturbed -- is this just a me thing or could it be that you:

• have a more inside-out than outside-in perspective, and "being digital" in, say, the Mark McDonald or John Seely Brown sense isn't your m.o.? 

• are already hitting your goals and accomplishing all you want or need to accomplish?

• want to hit home runs and the one- or two-base hits you believe could result from more fully engaging with constituents isn't worth it? 

• see us only as walking wallets? 

• are the expert and you intend to keep doing the same things that got you there? 

• don't possess the know-how you'd need to move your organization in these directions, or the time to learn? 

• are managing under a board of trustees that's asleep at the wheel? 

I hope to find the answers in 2014. The earlier the better. Until then, I'll "make of all this" an opportunity to: 

• keep learning 

• raise more questions like the ones above

• encourage the leaders of our neuro disorders /special needs organizations to think about delivering more value this coming year.  

I want things to go faster. 

I want all us to solve our problems -- pronto. But by the same token I'm with Dan Pallotta when he says:

Our problems are massive in scale. Our organizations are tiny up against them. And we have a belief system that keeps them tiny.

He has his own interesting ideas about how nonprofits might scale up and become less tiny. 

What's my answer-in-the-making?

I happen to believe that there's a lot of latent talent, creativity, and energy out there, i.e., brainpower, that our organizations could and should put to productive use to amplify their impact. Marketers of basketball shoes, online booksellers and reality TV shows do it. Shouldn't our community be able to do the same?

So, specifically to the leaders of the above mentioned orgs: 

I hope you'll be mindful of the fact that you /we need to do more, and be open to the possibility that you /we may actually be able to deliver it. I challenge you to look at your own management-belief systems. These are management challenges I'm talking about. These are management answers I'm alluding to.

*  *  *  *  *

*The list could go on and on.

**According to Children's Neurobiological Solutions Foundation, there are "more than 14 million children living in the US with one of more than 600 different neurological conditions."