ROUND FIVE: BRAIN Progress Report

Government Shutdown has Halted Obama's 

$100 Million BRAIN Initiative.

That's the latest as of Tuesday. Here's where things stood on Monday:

Create your own mind maps at MindMeister

ROUND FOUR: What CP Parents Are For (Part D.3)

How may orgs inside the CP sphere fully realize the potential of collaborative communities?

LOCAL KNOWLEDGE 

For those in the earliest, exploratory, stages of this relatively deeper form of constituent or customer engagement, it might help to think "grassroots." Think in terms of what you can do to expand parents' and families' opportunities to creatively address their own immediate needs. (where they can bring local knowledge, i.e., knowledge of what works in their particular contexts, to bear) 

For example?

I've written about the challenge of having as a parent to juggle so many different health care providers. There has to be a saner way. Since no clear-cut solution has shown itself, however, maybe a collaborative community could help? Maybe said community could look at the pros and cons of -- one plausible solution -- training and churning out more physiatrists? As an alternative, care maps seem to hold promise. (See my Thanks For Asking.) Maybe a parents' working group could form around using and maximzing their potential for our purposes? Both of these seem like the sorts of projects that would be well in line with, and that would advance the missions of, a UCP or RFTS.

MISSION DRIVEN

Another general starting place would be to ask (as a leader of an organization) what stands between where you are now and where you want to be: What are the key challenges or opportunities your organization needs to be work on, and could community collaboration be applied as a way of delivering value? Could it be employed to move projects forward?

Projects?

Projects that have been started but not completed. Projects to which you've committed but not yet planned out. And also... 

"Look into" projects. Per personal productivity guru David Allen, "One of the most interesting, subtle, and underutilized distinctions is whether a possible action or project is one that should be moved on, or whether it can simply be started at a later date, or perhaps not moved on at all." Here's how he describes his own look intos: 

My personal Someday /Maybe list is quite a bit longer than my active list of projects. It includes some ideas on one end of that spectrum that I would consider in the "fantasy" category -- like taking a canoe trip down the Mississippi River. On the more "realistic" side, it contains projects like scanning my old photos for digital storage and rewriting a segment of our Web site. Nothing in this category has a specific next action attached to it-- that's a defining characteristic.

I'm curious to know how many of our CP-facing-organization leaders keep a formal, up-to-date Someday /Maybe list?

Here are three (3) would-be projects of my own that could conceivably be tackled by collaborative communities:

• keep abreast of how other diseases or conditions are being chipped away at and beaten (from a management perspective) 

• map the relevant, ongoing CP-related research in one place (could be a wiki, or a mindmapping, or a database project) 

• How about a wiki or mindmap covering all the therapeutic and other interventions being offered around the globe, along with their various providers? This recently published CP Alliance and Notre Dame research analysis, A Systematic Review of Interventions for Children with Cerebral Palsy: State of the Evidence, would be a terrific jumping off point. 

Projects can originate from every part, i.e., from every level, of an organization, and can address the most mundane to the most sublime of intentions -- even an individual organization's missions, visions, and values. Even the direction our multi-stakeholder networks* seem to be heading together. 

At least a couple of visions seem to be coalescing around expediting CP-related research, medicine, clinical trials, etc. I'm all for them, but I'd also remind leaders that their visions are no more than human-made, mental constructs. They're sets of ideas that, bluntly, and not to be discouraging, score a zero percent (0%) on the "how they favorably impact my daughter's life today" test -- and that are also subject to being wrong in whole or in part. The only way to find out is to test, test, test them. If we want to be social-scientific in our approaches, we should be transparent. We should expose our thoughts about the future -- today -- and invite as much commentary from as many smart people as we can. 

Who's to say what a collaborative community made up of lots of engaged CP parents and others...working together online, making said planning and visioning their own, taking it to heart...could or couldn't contribute?

* alliances, consortia, partnerships and the like 

ROUND THREE: What CP Parents Are For (Part D.2)

We left off talking about the possibility of breaking work -- even something like a writing assignment -- down into smaller bits and inviting other people to help chip away at it. This'd be an example of using collective intelligence: the pooling of small and incremental contributions into coherent, useful bodies of knowledge. Surely it's an execution approach CP-facing orgs could use to get more stuff done.

Ever hear of Amazon's Mechanical Turk? It enables, in the words of David Weinberger*, "vast numbers of people to work on small, distributed tasks" in exchange for small amounts of money. What kinds of tasks? Getting images labeled, finding duplications in yellow-pages listings, rating the relevancy of search engines' results...

We have tons of communicating to do. Could any of it be run through Mechanical Turk or something similar? What about researching? I think about UCP's close to 100 affiliates and all the data they must generate. Could it somehow be worked on in small increments and parsed?

I really don't know much about this "microwork" business, but it does seem to represent a relatively shallower form of worker engagement. Little or no training or expertise are required. The contributors probably aren't deeply commited or emotionally involved. Much of what they have, potentially, to offer never enters the equation.

It may actually be helpful to look at the use of collective intelligence in terms of how relatively engaged the worker is -- with "fully dis-engaged" at one end and "fully engaged" at the other of a spectrum -- and to ask: What are the next, more-engaged kinds of work (after microwork) on the continuum? More to the heart of our matter: What additional kinds of work could organizations pull from the collective of CP parents out there?

As The Bridgespan Group sees it, the next, slightly deeper form of engagement involves getting constituent -- think CP parent -- input. The more insights an organization has about its constituents or customers, the better it should be able to increase its impact. You accomplish something, in other words, when you're able to engage constituents in doing the work of telling you about themselves. (Who are you? What do you think?) Gathering demographic info. Taking surveys. Conducting focus groups. Employing human-centered design processes. Making real-time and comparative feedback systems available. These are all ways of seeking input, of eliciting constituent voice. 

How many of these approaches are any of our CP orgs taking? Not many, I'm willing to bet.  We could be doing a lot more. Outfits that may be able to help nonprofits in particular in their quests to elicit customer voice? Keystone Accountability. Great Nonprofits.

The quality and quantity of information an organization is able to draw out via surveys, focus groups, and the like depends on how it frames questions and otherwise manages its interactions with constituents. Those things set the limits as they relate to depth of engagement.

The next level of engagement is where the org actually gets its constituents thinking creatively, developing programs and solutions together with your organization. On the same page and fully partnering with you, in other words, in furthering your mission. This is the deepest level, really, because lots of fully engaged people give you: multiple perspectives; ongoing relationships; surprises /unexpected better ways of thinking and acting...

The Net makes this sort of co-creation possible. And it holds out this promise: The more smart people you can deeply engage, the bigger the dent you can make in whatever problem it is you're trying to solve. This is where collaborative communities coming together at forums, wikis, mindmaps, etc. come into play. And where we'll head next.

*author of Too Big To Know (2012)

ROUND THREE: What CP Parents Are For (Part D.1)

I'd like to see us make our collective way to a time and place where and when CP is flat on its back receiving the ol' ten count from a million of us referees: One. Two. Three...

To get there, though, we'll no doubt have to do a voluminous amount of knowledge work. We'll have to develop innovative ideas, come up with new answers to old problems, make difficult choices from among imperfect options, engineer products or services, and more.

So let's get busy.

I mentioned in Part C that the Net makes it possible to selectively find in the masses the exact knowledge or expertise one needs. Our orgs are already doing this. I want to see 'em really ramp things up, though, and that's the subject of this post. I won't go into the challenge of accessing and attracting full-time help for full-time pay. That seems not to be much of an issue for those that can afford it. Instead, the focus here will be on low- or no-cost online solutions to acquiring expertise. 

Let's start with using social technologies for finding volunteers. 

Several of our nonprofits say somewhere on their sites that they're looking for volunteers. They typically have a "Get Involved" page that typically expresses a need for fundraising or event-specific help. Rarely, however, do they go further. Let's Cure CP posits a short list of "professional skill sets that can benefit our foundation." (including database development, legal or tax consultation, medical and counseling expertise, and copywriting) But it doesn't go into detail. It doesn't specify what any of the projects on its "to do" list are. And it does little to motivate potential volunteers ("What's in it for me?") to act. I'm not sure why. Nor am I sure why no one seems to be aggressively using social techs like Twitter and Facebook to do those same things.

Note to self: Why couldn't businesses seek volunteer help, too? Isn't it conceivable that a CP parent who wants to help out would be quite willing to share his or her skills with a CP-connected business -- let's say for example Advanced Muscle Stimulators, in Rochester, NY -- that has social as well as private aims?

PRO BONO may also be a powerful alternative for nonprofits, for completing projects of almost any kind and scope.

"Every year, for-profit business professionals donate over $15 billion in pro bono services" for nonprofit marketing, fundraising, HR, IT, board development, legal and strategic planning support. That's according to Taproot Foundation, a nonprofit that makes business talent available to organizations working to improve society. It's a resource nonprofits in the CP arena need to tap if they want to realize their full potential. I encourage ours to visit the site for tips and tricks related to getting pro bono support.

We've got to be smarter. Rather than do more with less, we've got to do more with more.

One particular (relatively small) communications project has been on my mind.

In May of this year, Cynthia at Reaching For The Stars informed me that she was working on "an article highlighting the most promising research areas and what that will mean for people with CP." We're almost in September and to the best of my knowledge it still remains to be written. 

To produce a piece like the one I suppose she has in mind can take a lot of time and thought. No doubt she wants it to be thorough, accurate, inspiring, etc. I also know she's swamped with other work. So the fact that it's still on the back burner is perfectly understandable, forgivable, excusable -- all those things. 

But what a darn shame. 

Her article-to-be goes right to the heart of what RFTS is trying to do. It's mission critical. And the would-be contents, in my opinion, are vitally important. This thing could have been in circulation for three (3) whole months by now getting: passed around...dissected...re-presented...and acted upon. Those THREE MONTHS LOST matter to my daughter.

Someone else could write the piece.

If pro bono copy writing isn't available through Taproot, well, then what about Fiverr.com? "Fiverr, stylized as fiverr, is a global online marketplace offering tasks and services, referred to as 'gigs' and micro-jobs beginning at a cost of $5.00 U.S. per job performed." (per Wikipedia) At Fiverr, there's no shortage of writers making offers like this one: "I will write an article up to 450 words about any topic for $5." It's all legit. It employs a reputation system like eBay's. It's worth a try.

An assignment like Cynthia's could even conceivably be broken down into smaller bits, i.e., into its component parts, and worked on by several people (parents). Or, as an alternative, we could use social technologies in entirely different ways to get her messages across. 

More on options along these lines in the next post.

Our CP community may very well be under-funded, under-appreciated, and under-other-things. But those of us in it don't have to be under-ambitious, under-clever, or under-hard-working. Avenues like the ones above are ours for the exploring. We owe it to our kids to check 'em out. 

ROUND THREE: What CP Parents Are For (Part C)

The next questions for leaders of CP-facing orgs become: How can you capture the passionate participation of CP parents? How do go about making better use of their know-how and know-what to get much needed knowledge work done? I'll suggest a general answer or two herein. In Part D, I'll get specific.

*  *  *  *  *

The Net. The Net. The Net. 
Need I say more?

When I say "the Net," what I really mean is our whole digital infrastructure. And I tend to make a simplistic distinction: 

On the one hand, I think of technologies and related practices that have to do with accessing and attracting resources. They're what most people probably think of when they think of social media. I more or less associate them with online communication and selling or fundraising. As for their roles in finding expertise and getting things done? They enable organizations to "selectively" tap into the world's intelligence, i.e., to find in the masses exactly the (small number of) knowledge or other resources they need.

To really drive performance rapidly to new levels, however, it's argued by the likes of too-many-management-consultants-to-try-to-name that organizations need to provide people with tools, resources, and incentives to mass collaborate. (Instead of social media think social production.) Here it's the use of "collective" intelligence -- the pooling of many small and incremental community contributions into useful bodies of knowledge -- they're touting.

Our own CP nonprofits provide us with examples of the latter. Two that jump right to mind: (1.) Michele Shusterman's / CP Daily Living's use of a Change.org petition platform in attempt to get United Cerebral Palsy (UCP) to change its name* and (2) Reaching For The Stars' use of blogging, e-mailing, and online contact forms -- in combination -- to enlist parents and physicians in successfully securing language in the 2013 Appropriations budget for specific Cerebral Palsy research funding. My "A Tale of Two Hope Machines" series also covers some of UCP's successful forays.

More about tapping into selective (Part D.1) and collective (Parts D.2 and D.3) intelligence to come.

I'd say we're just scratching the surface as it relates to taking advantage of the hidden talent out there. And I don't think it'd be unfair to there's way more social media than there is social production. The latter is difficult. Choosing projects that are worth pursuing, having well-formed purposes, clearly articulating the benefits to community members to contributing, etc. -- these are tricky propositions. 

If our orgs passionately want to improve and get better, though, they'll want to explore and master all of the above. 

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ROUND THREE: Classified Info (Part D)

Here's the latest iteration of my mind map of CP-facing orgs and individuals -- with emphasis on orgs: http://www.mindmeister.com/313292469/_.

I can think of lots of things that could be done to improve upon it. Here are a few off o' my "tasks" list:

• Compile the URLs of a hundred or so organizations' sites so I can add links to the map. [straightforward; simple] 

• Add to my list of independent therapy clinics. [Civil Society sector / Human Services category] 

• Find out who the specific participants are in the twelve (12) multi-stakeholder networks I've identified thus far. [would entail a degree of detective work] 

• Fine tune my definitions of: (a) the five (5) major sectors shown above, and (b) my five (5) Civil Society categories. [original thinking needed]

Would anyone like to volunteer to help? Please -- if so -- use my contact form at right to shoot me an e-mail!

ROUND THREE: What CP Parents Are For (Part B)

Maybe you've already associated this post's title with Wendell Berry's "What Are People For?" 

I got around to reading his (old?) 1990 essay about a month ago. It'd been on my radar for years and, well, Mr. Berry didn't disappoint. But he also didn't exactly answer his own question like I had hoped and having read the piece hasn't made answering mine -- "What are CP parents for?" -- any easier. 

No biggie, I suppose. I've read enough of his other writings to know that a major part of his answer would revolve around...

WORK. 

More specifically: I know he believes that people are for doing "the inescapably necessary work" of caring for their communities. They're (we're) for doing the kind of work that requires, among other things, a deep appreciation of context and much giving of intelligence, affection, and skill. 

Not coincidentally, I believe that good work -- think TLC, and lots of it -- is just what our CP community needs. 

What kinds of work? 

Brain work. Knowledge work. In 57 varieties.

I'm talking about specialized work that requires the specific expertise of people who probably already think of themselves as knowledge workers, and also about generalized work; work that could be performed by most people, many of whom probably wouldn't consider themselves knowledge workers. I think of regular old parents, for example, whose greatest hidden value may lie in the things we learn in the daily context of raising kids with CP.

Two things we CP parents have going for us are that (1) there are lots and lots of us, and (2) we have what matters most: passion, the desire to help -- in many cases without expectation of extrinsic rewards. 

Surely those aren't being used to their fullest. 

If we CP parents are for doing good work, it follows that leaders of CP-facing organizations have an opportunity -- maybe even an obligation -- to put us to work. According to many leading thinkers, that's management's JOB ONE anyhow. It's no longer, they say, about being the big brain of the organization and cascading your brilliance down and out to less-informed, less-wise others. That no longer flies.

What does fly has a lot more to do with capturing the participation of passionate people. (Here I'm talking broadly about tapping into the expertise, creativity, energy that lies outside of your organization, but the same idea applies to the people within it.) This is part of the new formula for success, the new way to solve new problems as well as find new solutions to old problems. It's a way to make your organization more indispensable and to amplify its impact.

There could be other more subtle benefits to putting CP parents to work, as well.

When you give people opportunities to chip in, you empower them. You give them chances to develop their talents. You increase the likelihood that good ideas will emerge. You build and inspire a sense of community. You bestow dignity. (Wendell Berry: "Our greatest dignity is in employment.") At a time in which many CP parents are financially tapped out and unable to contribute cash to the cause, and where opportunities to make a difference via the political process are limited, those sorts of things may mean even more. 

SO: 

To the leaders of CP-related organizations of all stripes, in all sectors, the opportunity to tap into what CP parents have to offer is yours. If you choose to ignore it, I wish you the best. I would also hope -- and I would bet -- that others will eventually see and seize it. 

As NiloferMerchant, the Jane Bond of Innovation, observed: "Doing work these days no longer requires a badge and permit. Anyone -- without preapproval or vetting or criteria -- will create and contribute." CP parents will take matters in their own hands with or without you. More and more of us are realizing that it's not just the smart people over there who can bring about progress. Reaching for theStars and Children's Neurobiolgical Solutions didn't to my knowledge ask United Cerebral Palsy (UCP) for permission before starting their own organizations. They saw unmet needs and just did it. 

That's the wave of the present. It's what the Mercers, the Deloittes, the McKinseys, the Gartners, and others in the management consultancy world have been preaching for some time. Their messages are readily available for consideration.

ROUND THREE: BRAIN Power

On July 14th, Charlie Rose and Eric Kandel led a panel discussion involving four of the neuroscientists who've been charged with leading our nation's new BRAIN Initiative. Here's some of what was said -- slightly paraphrased here and there -- that may be of special significance to the CP community. I've embedded the full video recording at bottom.

Participants: Eric Kandel [EK] of Columbia University, Thomas Insel [TI] of the National Institute of Mental Health, Story Landis [SL] of the National Institute of Health, Cornelia Bargmann [CB] of Rockefeller University and William Newsome [WN] of Stanford University.

EK: 

The overall purpose of the Initiative is to understand the normal human brain, but it's inconceivable that studying it wouldn't have fantastic spin-offs for things like Alzheimer's...   (and CP; which he didn't mention explicitly, but implied)

It'll take fifty to one hundred years for us to have a complete understanding of the human brain.

At every point, we're going to make progress -- which will ultimately benefit clinical neurology.

Ten to twenty years from now we'll be at a different level from where we are now, in terms of the treatments for neurological disorders that are available.

TI: 

The Initiative is not about entirely solving the problem of understanding the brain, it's about developing the tools to help us address it in new ways. It's about developing the next generation of tools to help the science flourish even more. 

I believe deeply that disorders of the mind can be understood biologically -- as circuit problems -- and that this project could ultimately give us the tools with which to improve diagnosis and develop new treatments. And that would be transformative.

WN:

It's about being able to make wiser recommendations to NIH (National Institutes of Health) about where to invest to really drive things forward. 

It's about developing tools to allow us to identify and treat different disease states much more specifically than we currently can.

A key exchange:

Charlie Rose: Help me understand, too: There's not a focus in this initiative on understanding diseases of the brain? 

EK: Not a direct focus. 

CB: Let's try and figure out enough about the brain in general, its groundwork, and use it to apply to all brain disorders it might be relevant to. We're trying to turn on lights here that will illuminate the broad realm of brain disorders (be they degenerative, developmental, or psychiatric) and the normal brain.

Ending on the most optimistic of notes --

SL: 

I think there are likely to be early wins for neurological disorders. 

With regard to epilepsy, we will get out of these studies a better way to assess circuit activity...which would allow us to predict when a seizure is coming and stop it before it begins.

In the next five or more years, work stemming from the Initiative will have some practical application to diseased brains.

*  *  *  *  *

ROUND TWO: Classified Info (Part C)

That UCP's "Life Without Limits" vision applies to people with a whole spectrum of disabilities has me wondering. Including multi-stakeholder networks, I've identified, for classification purposes, five (5) CP-fighting sectors. Wouldn't it be nice to be able to locate the orgs and indivs within them along various spectrums / spectra or continuums / continua -- so that they'd be closer to or farther from "focused on CP," closer to or farther from "operates in the health arena," closer to or farther from "provides direct care," and so on?

That's just one thing I'd like to be able to do. More generally, I'd like to be able to quickly and easily manipulate my data. (aka the folks I'm following on Twitter and what I know about them) How come? To see what the landscape would look like if it were rearranged in various ways. To look for patterns. To gain insights about relationships, etc. 

Enter mind mapping. 

A mind map is a graphical way of expressing what's in your head; a means of displaying the connections your mind makes. (From the play Who's Afraid of Virginia Woolf, I always remember George, one of the two main characters, jokingly referring to an abstract painting as "a pictorial representation of the order of [his wife] Martha's mind.") By definition, a mind map is a visual thinking tool that helps you structure information and better analyze, comprehend, synthesize, recall and generate new ideas. 

I'm in the process now of transferring my Twitter "Following"s into an online mind mapping program so I can structure them as I see fit. I'm using my five-sector framework as a basis for grouping. I've also started to add Web site links to some, thinking that this could be useful / powerful down the road.

MindMeister.com is the service provider. As it says on its site, "It's very hard for two people to write notes on the same piece of paper, but it's easy for them to share a digital mind map. Mind maps are open and friendly and invite input from everyone. If you're working on a complex project with a large team of co-workers, you can create a mind map, share it with them and encourage everyone to annotate it."

The real potential lies in this idea of using maps collaboratively. Like I said before, my map is crude at this point; only a hazy beginning. The new formula for getting better faster, however, is to put things like it out in public and to invite others to use, make comments, etc. Mine isn't public in the sense that others can add notes or make changes, but those capabilites are there. 

If you'd like to take a closer look at the actual map, here's a direct link:  http://www.mindmeister.com/311249601/who-can-help-us-ko-cp.

ROUND TWO: Classified Info (Part B)

With regard to grouping my Twitter "Following"s, I'm coming across organizations that I -- no matter how hard I try -- can't fit neatly into any one of my four main sector-categories. Furthermore, their names all seem to end in words like "alliance" ..."consortium" ..."federation" ...and "council".

Networks are what those organizations are. And when I examine their components I see that they're generally made up of civil society + private + individual + government sector stakeholders. 

So what?

Well, influential author, advisor and strategist Don Tapscott suggests that self-organizing networks will be key in helping us to solve our growing global problems: climate change, conflict, poverty, water scarcity, infectious disease,  economic stagnation -- maybe even CP. 

Mr. Tapscott is leading a study about how these new patterns of connection can fulfill their potential in fixing a broken world. In the course of learning what makes big networks tick, he's determined that they come in nine (9) flavors and that every network represents primarily one of the nine.

Participants in knowledge networks, for example, are in the business of creating knowledge. TED and Wikipedia are two widely known examples. And we have at least one good example of a knowledge network in the CP sphere: 

NeuroDevNet is dedicated to helping children overcome neurodevelopmental disorders. Its mission is to "ensure generated knowledge is translated into tangible diagnostic, preventative, therapeutic, social, economic, and health benefits for all." It does so by working with "partners in academia, the community, not-for-profit sector, industry, and government, and across traditional disciplinary boundaries and sectors."

Going back to my previous post, I guess you could say that visualizing networks -- existing or potential -- is another use for my classification scheme. This graphic below shows some of the NeuroDevNet's general* stakeholder /member types: 

More to come along these lines in Part C.

*Reaching For The Stars (RFTS) is the only specific member I know of to date.