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 Project manager cert's out of date?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.

Sunday, December 14, 2014

Putting Patient Engagement To Work, No. 6A

The business as usual conception that equates work with “employees doing jobs” seems so ingrained that the more general idea of engaging outsiders in meaningful ways – that's what patient partners are relative to an organization – is fairly foreign, I believe, to most organization leaders.

Nonprofit EDs, CEOs, and board members think in terms of having to manage inside staffs. Their jobs, in their minds? Mold their staffs to fit their organizations’ needs. Each and every staff member's job, in turn, is to be responsible for his or her role...which he or she does by carrying out projects and taking actions in line with whatever's the master plan. 

"Manage staff" is just one of a leader’s many jobs. My impression is that not many excel at it. Fewer still, as far as I can see, try hard to truly equip and empower their staffs. (which falls under the heading of delegating well) Now we’re expecting those same people to equip and empower patients? To engage with complete strangers, i.e., outsiders? Quite a big ask.

In my experience as a constituent of several nonprofits whose works touch in one way or another on neurological disorders and conditions, and whose effectiveness, in turn, may touch on the quality and longevity of my daughter's life, the leaders of those orgs are happy to have any monies I may be able to donate. They welcome volunteerism – “Get involved!” – in the traditional sense. Apart from that, however…

I can barely give my help away to them. I've been trying in earnest for the past two-and-a-half years (since the time I began this blog, much of which could be read as a record of how I've tried to be of service). Apparently they and their inside teams have everything under control.

In my mind, those nonprofits that presumably exist to help my little girl are fortresses. They cannot see me or other parents like me. Unfortunately – ridiculously – outrageously – criminally – I couldn't join in their reindeer games if my life depended on it.

Wednesday, December 10, 2014

Putting Patient Engagement To Work, No. 5

Patient engagement initiatives lead to patient acts, activities, and actions. Boiled down all the way, patient engagement is about getting things done. It's about work...and now that we've established that we can start in on the business of exploring and explaining why the title of this series is what it is.

Everyone I know who's an employee thinks of his work as his "job." It's the business as usual conception; we all can relate. It's what lets us distinguish between being "on the job" and "off the job," between being "at work" ugh and "at play" I'm free. It permits us to believe "It's not my job." Or, similarly, "It's the job of those smart people (those specialists) over there." It makes human resources of us.

To a theoretically pure and one-dimensional manager, resources are resources. The work an engaged patient or patient partner does for an organization is qualitatively no different than what an employee doing his job does. Or a machine doing its. 

Looked at that way, having patients (rather than employees) do the job should be a real boon to management, no?

Take for an example the job of observing and reporting on a kid's school performance and behavior while he or she is on a new medication. For the price of no wages, salaries, or tips*, the doctor, i.e., the manager in this case, gets much needed information. It's going to be high-quality info, too, because the teacher giving it is right there in the classroom, paying close attention. The insight gleaned should then lead to more effective (less wasteful, less guess-based) treatment. Economical and quality outcomes, in other words, should both be favorably impacted.

I believe the way we look at work and jobs going forward could have a lot to do with whether or not we're able to use patient engagement to the hilt, and, in turn, successfully tackle the gigantic challenges that life-threatening diseases and conditions represent.  

*which is not to say there wouldn't be costs involved

Tuesday, December 9, 2014

Putting Patient Engagement To Work, No. 4

I've had a few-decades-long fascination with management frameworks, comprehensive approaches, and attempts to codify what does or doesn't work in-and-for organizations. It keeps me continually wanting to keep up with what the ABCs (see previous post) have cookin'.

About a year ago, The Bridgespan Group, a leading consultancy serving nonprofits exclusively, came out with a report entitled From Input to Ownership: How Nonprofits Can Engage with the People They Serve to Carry Out Their Missions. I've since read and referred to it many times. What really interests me are the authors' attempts to (1.) categorize the different ways nonprofits are engaging their constituents, and (2.) locate those on a straight-line continuum based on the "depth of intensity" they represent.

Per their framework, less intensive forms of engagement are put on the far left. Those have to do with efforts to elicit and gather timely data, i.e., input, from constituents. Input such as? Basic demographic info. Answers to poll questions. Survey responses. The juicier stuff that focus groups and /or ethnographic research can often unearth. 

Remember the docs and clinicians at Boston Children's Hospital, the ones I intro'd in post No. 2? They want input. Third-party observations about their patients' health-states are highly valuable, so they're engaging teachers, family members, etc. to obtain them.

By comparison, staffers at PCORI envision additional roles for patients to play. All research projects, for example, go through planning phases. Why couldn't and shouldn't patient partners help to: identify the topics? develop the research questions? create the interventions? identify comparators? define the characteristics of the studies' participants? You end up with better plans when they chip in, believeth PCORI. Garbage in...garbage out.

Relating this back to the report -- 

PCORI is promoting and pushing for more intensive forms of engagement, what Bridgespan calls co-creation. "Some organizations have chosen to take constituent engagement further into what we call co-creation -- developing solutions with constituents." These the authors peg as middle-of-the-continuum activities.

Interesting, hunh? Both Boston Children's' and PCORI's conceptions of patient engagement seem more or less to fit Bridgespan's schema. No doubt you can see why I applaud the efforts. 

Is it entirely helpful, though? Is it logically consistent? 


I believe every patient-partner contribution counts. It all matters. I don't believe you're doing less, or lesser, work the farther right on some dreamed-up scale you go. Offering input in the form of answering "yes" or "no" to a poll question, for example, isn't inherently shallower than co-creating. If it helps further an organization's mission, it's valuable. No matter how much sweat, synapsing, or soul searching is required. 

So I guess I don't know what "intensity of engagement" really means. Can you reliably measure it? I don't believe so.

Drawing lines between constituent (patient) contributions that are valued as input vs. contributions used for developing solutions can get dicey, too. But I do believe categorizing different engagement activities by type could prove to be helpful. Maybe we can say what Bridgespan gives us in this regard is a start. I hope to return to it in future posts.

For now --

All the various things engaged patient partners do lead to checklists getting marked off, to dents being made in workloads, to getting things done. For a trained manager, different forms of engagement equal different forms of execution. For the untrained rest of us, it's just plain ol' work. And it's on to looking at patient engagement as work where I'll head next.

Monday, December 8, 2014

Putting Patient Engagement To Work, No. 3

The budding patient engagement "movement" is mainly about improving clinical and economical outcomes. It's about quality and efficiency, being more effective. D' you s'pose our leading management thinkers and practitioners might have a worthwhile thing or two to add along those lines?

I do. 

In the sub-sections below, I want to touch on one management process and another practice that I find germane to the subject. I'll describe some of the work being done around each, who's doing it, the tools and techniques they're using, etc.

Voice of the customer (VOC) (#notVolatileOrganicCompound)

The customer is king. And the "fact" -- debatable -- that he's always right (in reference to the famous Marshall Field quote) has been the case for as long as I can remember.

Recent studies are backing this up. From IBM's The Customer-activated Enterprise, for example, "Outperforming organizations are much more likely than underperforming ones to be collaborating with customers." Plus, "We found that companies that are receptive to customer input tend to have longer and more profitable relationships with their customers than companies that keep customers at arm's length."

Two companies that stand out in my mind for being ahead of the curve are Toyota (with its Toyota Way) and Procter & Gamble. Both have long "known it in their bones" that contexts matter. You simply can't do a great job of satisfying customers without partnering with them, and without absorbing and incorporating their very particular, i.e., local, knowledge. 

Now other companies, in their efforts to catch up, are looking to their own customers for feedback and insight. They're commissioning Chief Customer Officers*. And they're leaning for help on management consultancies that specialize in things like VOC.
VOC -- voice of the customer -- is a term used in business to describe the in-depth process of capturing a customer's preferences, expectations and aversions. I think of it as nearly synonymous (a near-o-nym? an almost-o-nym?) with patient engagement.
Vision Critical is one such consultancy. It specializes in building and supporting cloud-based customer intelligence platforms -- insight communities -- that provide companies with ways to deeply engage their customers. The goal in every case is to deliver meaningful insights that companies can use to make better decisions. Companies...

And other organization-types, as well. Nonprofits in the healthcare arena, for example, are using insight communities to understand and develop new patient journeys, explore and obtain feedback on new treatments, and more. Take Cleveland Clinic: it's been using one to listen to its patients. And reaping the rewards. Its "Patient Panel" has helped the Clinic improve internally in areas from marketing to operations to HR. Check out Do better for your customers: 5 business lessons from patient communities for more.

Patient engagement = getting things done through other people = delegating
If you've been following along and clicking through my links, you know about PCORI’s, Boston Children's', and Cleveland Clinic's conceptions of the kinds of things that are delegable to patient partners. There are a lot o' things, aren't there? So many, in fact, that one might begin to wonder what's not potentially delegable. (Isn't every thing on every employee's to-do list at least a candidate? I mean, once someone commits to completing a task, he or she has three options: do it right away, do it later, or delegate it to someone else...) 

Alison Green and Jerry Hauser, authors of Managing to Change the World (2009), believe it's a nonprofit leader's duty to delegate. "If you can delegate it, you should delegate it, ” they write. Delegating should enable you to make the most of your limited** human resources and thereby maximize the effectiveness of your organization in pursuing its mission. 
Stop for a second. How many nonprofit leaders, for the sake of the mission, try to hand off every task they can? How many equate patient engagement with delegation?
When you delegate well, you put people in positions to do what they're dramatically well-suited to do. But it doesn't just happen. To the contrary, there are practices to be practiced, step-by-steps to follow. Green and Hauser offer easy-to-implement tools, for example, for determining what to delegate, assigning roles and responsibilities, and successfully guiding off-loaded work to completion. Bain and Company (one of Earth’s largest and oldest consultancies; Consultasaurus rex?) has compelling things to say about the decision making that goes into delegating. (“One key to successful delegation is to coach team members on making and executing critical decisions.” See How to be a Better Boss)

The bottom line here? 

Those who would engage patients should learn the ABCs of delegating from the ABCs -- thanks for the acronym to David K. Hurst, one of the “C”s -- of management: Academics, Business people, and Consultants.

*  *  *  *  *
Now, generalizing and summarizing:

There’s no need to completely reinvent the wheel if you’re an executive in the healthcare world who's considering a patient engagement initiative. You can look to what’s working in the business world…and apply liberally. I know in the cerebral palsy (CP) /neurological disorders arena we’re not drawing upon that knowledge nearly as much as we could. 

*Essentially, the CCO is expected to form deep personal relationships with the company’s customers to truly understand them. 

**I’ll call into question how limited those human resources really are later.

Wednesday, December 3, 2014

Putting Patient Engagement To Work, No. 2

It's time to mix in a definition. Here's one to grow on from Wikipedia:
Patient-centered care supports active involvement of patients and their families in the design of new care models and in decision-making about individual options for treatment.
As the parent of a sometimes patient -- a crude way of saying my daughter's patientness is an aspect of her Julieness -- my brushes with patient engagement have only been indirect: I've read or heard about it, mostly in conjunction with research studies; mostly intrigued by the idea that having patients participate can lead to better results -- which makes me typical. Indeed, per The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review, published this past June, "the ongoing academic debate seems to focus principally on patient engagement's impact on clinical (and economical)* outcomes." 

I say those things to support my contention that "medical-scientific" is the prevailing perspective out there. Next I want to introduce two real-world approaches I believe represent it well.

*  *  *  *  *

Clinics and private practices associated with Boston Children's Hospital are using a new online platform to help paint clearer pictures of how patients are faring between doctor visits. They're relying on parents, teachers and other caregivers to become "cultural anthropologists," in a sense, by having them observe and then upload reports about kids' symptoms, school performance, quality of life, and more. The benefits? Among others, docs now have more accurate information with which to work, office visits are more productive and on-point, and treatment decisions appear to be improving. 

For details, you'd do well to turn to Boston Children's Hospital Monitors Young Patients with Data from Caregivers, Parents, Teachers and Coaches (Sept. 12, 2014) from Sherri Dorfman's blog, Consumer eHealth Engagement.

*  *  *  *  *

Patient Centered Outcomes Research Institute (PCORI) -- how's that for a medical-scientific mouthful? -- is a nonprofit organization that funds comparative clinical effectiveness research (CER) studies to determine which healthcare options work best in particular circumstances. Especially relevant to the focus here, PCORI claims to incorporate patients in its studies "more consistently and intensively than others have before."

What does that mean?

With regard to the research it funds, PCORI seeks to involve "patient partners" (definition: patients, family members, caregivers, and the organizations that represent them that are representative of the population of interest in a particular study) in all aspects of its projects: from planning, to conducting, to disseminating results. Whereas Boston Children's values patient partners for their willingness and abilities to make observations, PCORI values its partners for more and other things.

*  *  *  *  *

I hope to comment more about both approaches in later posts. Two pre-comments comments: 
  • I think one could safely say that PCORI's approach to patient engagement is more expansive than Boston Children's; 
  • It's worth noting that PCORI's Engagement Staff** is a veritable DQ Blizzard, with social science and humanities grads of every flavor mixed in.
To that last point, I gather there are some business school grads on staff -- but not many. I'm curious as to why. How come? 'Cause I believe management, the field, can bring a lot to the discussion. 

It's where I plan to head next.

*I added the parens. More about the economics of patient engagement to follow.

**Get a load of these titles: Chief Engagement and Dissemination Officer; Chief of Staff, Engagement; Director, Patient Engagement; Deputy Director, Patient Engagement; Engagement Officer (2); Program Associate, Engagement (5); Project Assistant, Engagement

Thursday, November 27, 2014

Putting Patient Engagement To Work, No. 1

I don't know when "patient engagement" and "patient-centeredness" made their ways into the language -- any more than I know when patients (also known as people on the receiving end of medical care) began to disengage in the first place. Nevertheless, both terms are widely in use and I'd like to peer into what we mean by 'em. Two things I'm willing to bet before I start: (1) we still have a lot to learn about putting patient engagement to work, and (2) we stand to learn a lot from unexpected and off-the-radar sources. 

Why engage patients in health care? No doubt there are a zillion+ different answers. 

To get things rolling, I want to put it out there that the mainstream views on the subject are essentially medical-scientific ones, and that the loudest answers seem to be stemming from healthcare professionals. (some of whom attended FasterCures' Partnering For Cures conference last week in New York, where patient engagement was a red hot topic) For the record, I have no problem seeing where the researchers, clinicians, hospital-and-nonprofit-types who have adopted this perspective -- and who speak it fluently -- are coming from. 

But I also see patient engagement from at least two other perspectives:
  • a management perspective that sees patients as resources who may or may not (via their employment) add organizational value;
  • a still-to-be-named perspective that wants nothing to do with reducing patients to resources, but sees needs for patient participation on far, far bigger scales; scratch that -- on steroids.
In the series of posts I'm envisioning, I hope to relate these to the more mainstream medical perspective and mine them for all they're worth. Could they teach us to do patient engagement better? Could exploring them help move the conversation forward for the benefit of all? I have a healthy hunch the answers are "yes" and "yes."

According to FasterCures, "One in three Americans lives with a deadly or debilitating disease for which there is no cure and few meaningful treatment options exist." Think about that...

Can we afford not to consider all things from all sides?

Friday, October 17, 2014

Interviewed By FasterCures

Some of my thoughts revolving around FasterCures' Consortia-pedia project

Why are you so passionate in finding ways to accelerate research for cerebral palsy?

The best way to answer would be to introduce you to my thirteen-year-old daughter who was diagnosed with CP about a year after she was born. Everything flows from my personal desires to help her, and then from my more professional interests in management. Ultimately, I'm passionate about accelerating “good work” of all kinds by groups operating in and around the CP sphere.

You created the Consortia-pedia mind map, a great way for visualizing how to develop and manage biomedical research consortia in an interactive way. What impelled you to do it?

Well phrased. A mind map is a visual thinking tool – cloud-based, in this case – that I routinely use to help (me) make sense of complicated stuff. Consortia-pedia is laden with great info. I thought a map might help to engage and expedite other peoples’ understanding of it, and maybe even motivate them to use it. 

Why are you interested in research-by-consortia?

I'm trying, generally, to bring the best of the best management thinking to CP-facing organizations. I recognize research-by-consortia as a promising way for people to come together to address shared problems and/ or enable innovation. I’m interested in how to do those things well.

What challenges in cerebral palsy research do you think could be best addressed by a consortium-based collaboration?

There are currently formal and informal cross-sector networks dealing with CP in its many aspects. NeuroDevNet, a Canadian network dedicated to neurodevelopmental research, is one example. To my knowledge, though, none actually calls itself a consortium.

There are also standalone nonprofits with their own sets of priorities, most notably Cerebral Palsy International Research Foundation, CPIRF, which funds cutting edge research. Its priorities touch on at least three of the four consortia “objectives” your work uncovered: basic science, products, and biomarkers (to identify babies at risk, for example).

What's your relationship to those groups and other CP organizations?

I’m a parent living under a CP umbrella. I’m also in the challenging position of being an outsider relative to those groups. So, going back to CPIRF, for example, I’m 100% on board with its research agenda but I’m equally in the dark as to how it’s being managed. 

I want the leaders of all of our organizations to use the best available tools and resources. Consortia-pedia is a great resource for people involved in starting or running complex collaborations. I doubt, however, that our leaders know about it. If my map could somehow play a part in drawing their attention to it, I’d be a happier camper. 

From your perspective, what can biomedical researchers do better?

To arrive at faster cures across the board, we need to do both more and better work. It follows that I'd like for leaders to be open to better ways of maximizing the overall effectiveness of their organizations in carrying out their missions.

Consortia-pedia offers management advice from a strong translational science perspective. There are other folks coming at (the subject of) “collaborating better” from business management and organizational science perspectives who also have valuable things to say. They’re getting to where they’re now able to offer shortcuts and tools that any consortia leader could readily apply -- and so should pay attention to.

That's an example of a way organizations can “open themselves up” to the whole big rest of the world for help.

Do you have another example in mind?

I do.

I'm high on the idea of making much greater use of the experience, creativity, and talents of the many (tens of millions, in the case of childhood neurological disorders and conditions) patients and family members who have personal stakes in our organizations, consortia included. Who knows how many of us might be willing and able to work to advance our favorite missions, and to do so for little or no compensation?

It's becoming easier and easier to connect with parents like me in meaningful ways. As I hope my map shows, we can be more than just potential donors and/or passive recipients of one-way messages.

Tuesday, October 7, 2014

The Lives And Times Of Our Ideas

Dear Michele:
About your September 09 blog post where you make the case that we should classify cerebral palsy as one of a handful of conditions that may result from an Early Developmental Brain Injury (EDBI)...

I say bravo. Thank you for:
  1. bringing the issue to light*;
  2. challenging your readers in longer-than-140-characters form to use their noodles;
  3. questioning the status quo and continuing to push to make things better.
I think you've hit on an important issue. And I'll be on the lookout for what happens next. Will AACPDM pick up on it? Will your proposal make its way to a decision? If so, will we be able to look back years from now on said decision and judge it to have been effective? That last would be no small accomplishment.

Effective decisions necessarily take into account the effort involved [Is the time, trouble, expense, etc. involved in making it greater than what the decision merits?], the timing [Can it be made in an acceptable time frame?], the yield [Will the decision be faithfully and adequately executed?] -- not to mention quality considerations. [A high-quality decision is based on relevant facts, assesses risks as accurately as possible, and rigorously debates alternatives.]

I'm not sure our community is equipped to tackle all that. At minimum I believe we'd have to develop new capabilities and means, including ways to involve parents (think "patient engagement," "patient-centeredness") like the ones who've been commenting on your post. Before we dive in and decide -- haphazardly -- things should be thought through.

Or maybe not. 

You stressed the importance of information pipelines. I understand where you're coming from, but I also don't believe that knowledge really flows in pipelines like we've always supposed. Knowledge is more a property of (messy) networks.

A nice upshot of that is that you don't necessarily have to wait for somebody else's seal of approval on this matter. If your framework helps you organize and guide your thoughts and actions as they relate to caring for your daughter -- go ahead and use it. Write more about it. Tell others how it works. Be selective in your use of the term "cerebral palsy." Trust that others in your network will follow suit, i.e., that your framework will catch on organically. I'll try to be more careful myself.

EDBI Daily Living is a heck of a lot clunkier than your current title, but maybe you should consider it or something like it?


*I'd be hard-pressed to say how or when the term "cerebral palsy" has helped my daughter in her lifetime -- which began, coincidentally, on September 09. [2001]

Thursday, April 24, 2014

Why Our Nonprofits Need To Network (With Other Nonprofits)

I have a problem with today’s cerebral palsy (CP) interventions and treatments: they’re barely making a difference. Typically they result in only 4-10% lifetime gains or improvements* and that’s not good enough. I want to see those numbers doubled or tripled -- pronto. 

But -- 

Can anyone tell me who’s in charge of upping the percentages? With whom should I get in touch? 

One might guess that the responsible party is one of the twenty-five (25) or so US-or-Canada-based nonprofits whose mission has to do with improving outcomes as they relate to CP. The fact of the matter, however, is that no single organization is responsible. Nor could it be. The challenge – how to dramatically increase the effectiveness of our interventions – is way too complex. Too many layers and uncertainties are tied to it.

It’s actually a great example of the kind of “wicked” problem that’s best tackled by a network. One of countless such problems our special needs communities face.

Wicked problems don’t have one right solution. They’re solved through trial and error, consensus decision making, and experimenting-and-learning your way to what works. Networked collaboration is the most efficient way to share the associated costs, risks, resources, etc. And our new digital infrastructure can make it all the more efficient.

The great promise of networked collaboration is that everybody wins. Each participant “gets better faster” by working with other participants. The objectives of all stakeholders are advanced while the larger issue /shared problem is addressed. The authors of The Power of Pull also stress the value of long-term relationships that are often fostered: "As participants get to know each other and find that they share similar ways of looking at their endeavors, they start to trust one another, which prompts even deeper levels of collaboration (and tacit knowledge creation) around the difficult challenges they share." 

Of course, success depends on how well you collaborate, i.e., on how well the work itself is orchestrated. There are plenty of big thinkers out there sorting out the various management approaches being taken, trying to uncover best practices, etc. Here, in closing, are two good examples and potential resources for you:
  • The Tapscott Group is actively exploring methods for making collaboration happen both within organizations and via multi-stakeholder networks. 
  • FasterCures has been studying ways that networks of organizations are collaborating to expedite biomedical research. Its Consortia-pedia provides an in-depth look at the "research-by-consortium" trend and is loaded with information meant to help guide and inform emerging and existing collaborative efforts.
*  *  *  *  * 
Nonprofit networks are among the most powerful forces that an organization can channel for the greater good.

*per Dr. Iona Novak, Head of Research at CP Alliance

Monday, April 21, 2014


Digital technologies are changing how we travel, plan, stay informed, bank, read, entertain ourselves, etc. But they don’t, in balance, seem to be significantly changing how organizations in and around the CP sphere are getting things done. I’m with Lucy Bernholz who writes in her Philanthropy and the Social Economy: Blueprint 2014:
…most of what we see are “add-ons” to old ways of doing work. We try to use e-mail or Twitter solicitations to replace or amplify our direct mail efforts (and find it doesn't yet work very well). Mobile credit card readers supplant online “donate now” buttons, and nonprofits add PayPal or Google Checkout options to their online donation options, but that’s about it.
Low-or-no-cost and proven-effective tips, techniques, and tools for being more digitally productive are readily available. (That's what this series of posts is ostensibly about.) I want the leaders of our organizations* to be aware of them, and to master them. I want them to succeed.

In the mean time, however, we parents and family members can’t afford to sit around and wait. There’s much work to be done. And though it may be daunting, there’s this good news, too: 

Doing work these days “no longer requires,” in the words of Nilofer Merchant, “a badge and permit." The tips, techniques, and tools that are there for our organizations’ taking are also available to us individuals. Opportunities and the means to make a difference are every bit as much ours as they are theirs.

What good can one person do? I’ll offer my two cents on the matter in the next set of posts.

*numbering in the hundreds? hundreds of hundreds?

Thursday, April 3, 2014

My Two Cents_14

Notice that my solution for beating CP has, to this point, said nothing about advocacy, nothing about government funding, nothing about stem cells, nothing about disability rights, nothing about assistive technology, nothing about neurorehabilitation. Inarguably, that’s where a lot of the action is. Organizations working in those areas have pivotal roles to play. 

What I care about is how effectively they're pursuing their respective missions. 

My solution has largely to do with how well they get things done with and through "outsiders." In my opinion, they need to get better at working with and through individuals, e.g. the parents and family members of the millions of children in the US with neurological disorders. They also need to get better at working with and through other organizations – other nonprofits, for example. That's a topic I hope to explore later on.

How best to do these things are management matters. Making the smartest possible uses of the world’s available brainpower should be our leaders’ top priority. Their job is not to advocate, research, educate, etc., but to orchestrate talent. They need to understand that. As do their board members and other stakeholders. 

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Actually, it's unfair to put the onus just on them. We’re all responsible. I’ll start pointing the spotlight at us parents and considering what we may be able to do to move things along in the next set of posts.

Monday, March 31, 2014

My Two Cents_13

Last day of National Cerebral Palsy Awareness month

At the start of this series, I raised the question: Can our community somehow get bigger up against its challenges? Now, here -- near the end -- I’m suggesting that it can -- -- and that one way to do it is by turning outsiders into insiders to create an ever-expanding circle of impact.


Go to it. Go right ahead, org leaders, and begin creating more meaningful opportunities for people to participate. Go beyond traditional notions of volunteerism. Transcend the tired old tactics.

How you ask?

Well, you could re-read the preceding posts to get a better sense of what some of the leading management thinkers are saying – and try some of their tips. Another option?

I've been experimenting with what I see as a possible “engine” for turning outsiders into insiders. A tool-in-the-making that subsumes, i.e., factors in, several of the big management ideas I've been writing about (users don’t have to pay those any mind; all they have to do is provide fuel) that I’d like for us, collectively, to try out.

My idea is to give outsiders more opportunities to do the real, day-to-day work of our organizations. My tool -- a simple mind map -- is for publicizing requests for help from organizations like yours. The fuel on which it runs? Everything on your “to do” and “might like to do” lists that isn’t getting done. From discrete tasks (e.g. write a fundraising appeal for a new campaign) to multi-step projects. From the simple to the complex. From the realistic to the fantastic...

Give me those to me and I’ll add them to the map. I'll invite parents and others to peruse it. Then I'll encourage them to put their talents, experience, etc. to work for your various causes.

Is said tool what I’d like it to be? Nope. It’s just a scrawny substitute. The kind of talent marketplace I have in mind would much more closely resemble a or That doesn't mean, however, it can’t be valuable as it is for moving us in the right direction.

When my daughter was diagnosed over 10 years ago with cerebral palsy, I was at a loss not only about where to go for help but about what to do to help. Why couldn't we create a single place where parents can go to find out [1] where help is needed and [2] how to pitch in in ways that might move our organizations – and our larger community – forward? 

I see no reason.

Sunday, March 30, 2014

My Two Cents_12

Yes, dear nonprofit leader, I’m saying that parents and /or family members of kids with neurological disorders and conditions can do more than stuff envelopes; they can do more than donate money; they can do more than read what you choose to write about yourself on Facebook. 

But you’ll have to encourage them to participate. This is what Bridgespan is advising. So, too, are the authors of Forces for Good. Your job #1 will be to create meaningful opportunities for inside-outsiders. Win-wins for both sides.

I like what social media theorist Clay Shirky brings to this table. If given the chance to address our community, I imagine he’d say: 
Even though you parents are stretched thin taking care of your kids’ immediate needs, I’m willing to bet you could volunteer or collaborate on shared projects with organizations working on their behalf. Our new digital infrastructure gives you the means to do that. Surely you could contribute  a few hours' worth of your talents, creativity and experience a month? 
To you organization leaders, you have an opportunity and a responsibility. There’s this “cognitive surplus” – this unused brainpower -- that you could and should be tapping into. The parents and family members of our 14-18 million special needs kids represent many (countless?) hours of participatory value that are up for grabs. This surplus is a resource you can and must design around if you’re to have the kind of impact we need to beat CP -- and to beat it sooner rather than later.

Here’s a link to Shirky’s 2010 TED talk about our cognitive surplus.

My Two Cents_11

Bridgespan posits that deeper connections with constituents can equate to greater organizational (nonprofit) value and impact. Makes sense to me.

I especially like the way it spells out in a 2013 article some of the more promising forms of constituent engagement and how they differ in intensity. On the weaker-shallower end of things, when an organization conducts a satisfaction survey, for example, it receives timely and useful input but doesn't generally learn much about the respondents, who don't reveal much about themselves in the process. Engage those same respondents in a focus group, by comparison, and the organization is likely to gain a deeper understanding of their aspirations, challenges, and strengths -- and the respondents themselves are likely feel more connected to the organization.

Moving to the other end of the spectrum...

Stronger-deeper forms of engagement are tied to cases where constituents are co-creating, doing high-value mission-driven work, and /or controlling organizational resources, i.e., where they're taking some ownership.

Whenever constituents (feel free to substitute inside-outsiders, or, better yet, parents and family members) respond to an organization’s engagement efforts they're essentially doing work for that organization. They're giving it something of value -- often just for the asking -- that it would otherwise have to spend resources to acquire.

Key takeaways for organization leaders? 

Constituents can help advance your missions in a number of ways, many of which you probably haven't given much thought to. And -- the other side of the coin -- there are also a number of ways to draw people in who may be both willing and able to help you carry out your mission.