A Tale of Two Hope Machines, 4.0

THE COMMITMENTS THESE TWO ORGANIZATIONS HAVE MADE in the direction o' becoming hope machines, among other things: Where did they come from? What are their origins?

Their own descriptions of "the business they're in and why" should be a good source for answers. Getting a grip on their missions, values, and visions, in other words, should help.

It’d be nice if those things were easy to find online and in familiar (to me) formats. Since they're not, however, I've had to do my archeological best to excavate, label, and piece things together myself. This is what I've come up with so far.

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Mission: The fundamental purpose of an organization and what it provides to its beneficiaries. 

Luckily for us, mission statements from both organizations are posted on their respective sites:

Red Treehouse was created "to provide a welcoming and vibrant online community for families and professionals to explore resources to help (promote the well-being of) children and young adults, prenatal through age 25."

Boy, am I puzzled. I've been assuming that the group's offerings are intended, ultimately, to benefit “children with chronic illnesses and /or disabilities.” The mission doesn't make that distinction; it seems to be inclusive of all 0-25 year-olds. If that's the case, how much does the promise of FINDING HOPE (as a result of one's association with Red Treehouse) really mean, potentially, to the majority of that population?

United Cerebral Palsy (UCP) and its nearly 100 affiliates "have a mission to advance the independence, productivity and full citizenship of people with a spectrum of disabilities by providing services and support to more than 176,000 children and adults every day—one person at a time, one family at a time." 

The HOPE that quality of life for children with CP might be dramatically improved was the driving force behind the crusade to create UCP in 1949.

Values: Ideally, an organization's values prescribe its attitude, behavior, and character. 

Whole Foods says its core values "are the soul of our company.” What values are at the core of Red Treehouse and UCP? What internal compasses guide the two?

Although there's no official statement of values on either web site, I think one can discern what matters most to each...by snooping around. Which I did. What struck me was how remarkably similar their core values seem to be -- so similar, in fact, that I’m comfortable positing that Red Treehouse and UCP mutually value:

• a sense of urgency: Strive to make things better for kids today.  
• the belief that all things are possible: Challenges, be they physical or mental, are meant to be overcome.  
• the power of information: It's a matter of getting the right information to the right people at the right time.
• networks of Internet-connected people: Build the platform and a smart network will grow.

Vision: The mid- to long-term goals of an organization; an expression of how it wants to be perceived by the world. 

I find it fitting that both organizations are on the paths they're on now largely because eight (8) years ago the people behind them saw a need for change. Sweeping change. Sometime in 2004:

UCP kicked off "a far-reaching dialogue about the ways in which people with disabilities could become fully integrated in society and live life without limits." 

A small group of people affiliated with Ronald McDonald House Charities (RMHC) "convened a meeting with community leaders from hospitals, universities and social service organizations in Greater Cleveland." (RMHC and Ohio Family and Children First combined efforts in 2011 to form Red Treehouse.)

Conferences and visioning sessions involving large numbers of participants ensued. They asked essentially the same questions: What's not right? What would a better future look like for kids with disabilities? What needs to change?

In both cases, takeaways from their heavy-duty "visioning" were then funneled into (1.) strategy reformulations, which lead, in turn, to things like the new web sites and other digital deliverables that I'll start dissecting in the next post, and (2.) the big-picture, high-level goals of each organization.

Most larger organizations use formal vision statements to communicate their big-picture, high-level goals. A classic example? JFK's [to] “land a man on the moon and return him safely to earth before the end of the decade.” (his administration's vision for the US space program) That statement contains three (3) key components: a stretch goal, a definition of the entity's niche, and a time horizon.  

I'm sure Red Treehouse and UCP have vision statements. But I can't find anything as comprehensive as I'd like on either site. About the best I can do is report on the ways in which they do or don't address these components (of a "model" statement):

Niches: Both organizations do an outstanding job of spelling out what their niches are. I guess I shouldn't be surprised: they seem to parallel one another to a T. Each aspires to be a broad, strong educational and support resource that provides hope for – in the case of Red Treehouse, Ohio families with kids with chronic illnesses or disabilities (regardless of diagnosis); in the case of UCP, people the world over "with a spectrum of disabilities” (cerebral palsy, but also: Down Syndrome, Autism Spectrum Disorder, physical disabilities and traumatic brain injury)

Stretch goals: Stretch goals set the pace, establish a sense of urgency, and challenge an organization's stakeholders. Apart from references to numbers of people who use or receive support from their various services, I've yet to come across any indication of what stretch goals may be in place. No measures of success. No references to "units of hope" or (more broadly and realistically) to any sort of customer satisfaction target... 


Time horizons: When will the organizations' various programs, projects, initiatives, etc. bear fruit? The only time references anywhere are in the vague "find hope for today and to look forward to tomorrow with greater confidence, support and expectation" [ Red Treehouse ] and "We strive to build a better world for tomorrow, today." [ UCP ]

Organizational vision statements are frequently incomplete, i.e., not expressed in the well-rounded form of JFK's. The problem with that is it makes them not very conducive to being carried out, i.e., executed.

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SO, WE'VE BROUGHT TO LIGHT SOME OF THE BIG IDEAS upon which these two organizations are founded. Next, we're going to fast forward a bit -- zooming past the strategic analysis, development, and planning that have flowed o'er the years from their visioning -- to the products of all that, the actual offerings of the organizations: the goods, services, etc. that people like us on the receiving end get to see.

A Tale of Two Hope Machines, 3.1

Why all the attention paid in the previous post to the use of the word “hope?”

Language counts. 

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Dear Red Treehouse and UCP:

Somewhere Wendell Berry wrote that abstract, ‘objective,’ impersonal, dispassionate language...cannot replace, and it cannot become, the language of familiarity, reverence, and affection by which things of value ultimately are protected.
 

It’s a big job you two have taken on, and the language you use lets us know what you make of its attendant challenges and opportunities. It reveals how passionate you are. (or aren't)  Words don't tell the whole story, of course, but they “clue us in” as to whether or not we should invest: our monies, our participation, our emotions…

Hope may be the most emotionally charged word on your respective sites. Before we get ours up, we want to have some idea of how committed you are to stewarding it. Are you up to the task?

We sincerely hope so.  

A Tale of Two Hope Machines, 3.0

How are Red Treehouse and UCP letting the rest of the world know they’re in the hope business? 

Note: My focus going forward will be on the digitally-mediated (i.e., electronic) communications and information flows of both organizations. That pretty much covers everything Red Treehouse does, and but a portion of what UCP does.

Red Treehouse: 

There she is on the homepage -- in the tagline at the top: Discover Answers. Make Connections. Find Hope. -- and again in the "Welcome to Red Treehouse" text block: Hope for today and confidence as you look forward to tomorrow. As far as I can tell, those are the only places where hope is explicitly mentioned on the whole site.

Couple of observations:

• Hope is linked to other things like answers, information, and empowerment in both instances. The implication?  Where there's hope...answers, information, and empowerment are on the trail leading up to it. 

• The verbiage is spare, to say the least. There ain’t a lot of emotion imparted. 

To the second point, the floweriest expression I've been able to find of how hopeful the organization itself feels lies in a news piece (ostensibly a press release) about going live with the Web site in greater Cleveland. Red Treehouse is described therein as “a place to explore, discover and see beyond immediate surroundings. It is a place where people come to find new possibilities, where people gather to help children and young adults meet needs, to overcome challenges and develop to their fullest potential.” 

UCP: 

Believable hope is listed at www.ucp.org as one of six (6) building blocks to have come out of the visioning sessions that were tied (from '04-'07) to the organization’s “Life Without Limits” initiative.* 

Videos from said sessions were to have been posted online, but, as far as I can tell, have not been. That's unfortunate -- I believe -- for a couple o' reasons: (1) I bet the conversations about hope were inspiring at the time and could continue to inspire; (2) Those same conversations would no doubt reveal how and why the adjective "believable" was tacked on.

My best guess (re: "believable") is that the participants concluded that hope has to be realistic, i.e., that people have to have good reasons to feel hopeful. Makes sense. However, what's "good reason" to one may not be to another. For some, reasons have to be scientifically supported or logically proven to be considered good; for others, God's word is more than good reason enough. Which of these did they have in mind? Red Treehouse doesn't make the same distinction. How come?

Continuing on...

Like Red Treehouse, UCP uses the word “hope” infrequently on its site. Unlike Red Treehouse, however, UCP writes hope (albeit indirectly) into and onto all of its digital deliverables. That UCP is committed to ensuring a "Life Without Limits" is everywhere you click. 

Putting out there the possibility that my child could live a life without limits plants seeds of great hope in me. I’m sure it does the same in other parents, as well.


*Last year, Life Without Limits (LWL) was apparently reconstructed. I haven't been able to find details. I only assume believable hope is still a key element.

A Tale of Two Hope Machines, 2.0

Because hope is such a slippery concept, I’m gonna try my darnedest to keep this dictionary.com definition front ‘n’ center:

the feeling that what is wanted can be had or that events will turn out for the best

Maybe down the road it’ll be instructive to “pick hope apart”, measure it, compare it with other concepts, etc. But – note to self – I don’t want to get sidetracked...

Any more than I already have. 

Hunh?

Already I’m having second thoughts. I said in the Intro that, in addition to having received valuable information from my friends in Denver, I found hope. That’s true, but I left out something important. 

Receiving and reading their report was also like magic.   

What’s more, I think it was intentional (the magic) on their part. Deliberate. Sneakily engineered into the product. While searching online, in fact, I came across this definition they’ve used over the years: "Magic is emergent, an awareness arising from a fusing through present action of curiosity, intensity, sensitivity, integrity, wonder."

Should UCP and /or Red Treehouse aspire to deliver magic? Magic and hope seem to have important things in common. Is magic a higher good? A different one? 

Note to self: Relegate these to the back burner. For now.

A Tale of Two Hope Machines, 1.0

“Lance Armstrong cheated.”

“Lance Armstrong‘s a terrific athlete. Y’ know, he swam competitively as a kid…”

“Lance Armstrong is a hope machine.”

Of the opinions I’ve heard voiced since Lance Armstrong was banned by the U.S. Anti-Doping Agency (USADA), the last one sticks out. A hope machine. For having survived cancer. For his seven Tour wins in a row. For the LIVESTRONG Foundation: a top-ten funder of cancer research worldwide and source of inspiration and empowerment to many.

What, if anything else, has ever called to my mind the words “hope” and “machine” together? Is there a Lance Armstrong equivalent in the cerebral palsy (CP) world? 

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When I met Leif Smith and Pat Wagner, they were operating what they called “a general store for explorers” in Denver and making a rather unusual offering. I don’t remember how the value proposition was worded, but their service worked as follows. For a small investment – a little bit o’ dough and an earnest effort on my part to put into words what I most wanted to explore (my “passion”) – they would provide me with custom-tailored information: names and descriptions of people from around the world who could help me progress, i.e., forge ahead. 

In machine-like fashion, they used my query, my quest, as raw material / input...added value to it...and generated a report /output.

The report I received from them in return was impressive. As much as I valued the content, though, I valued learning that there were other people out there with similar interests even more. It "proved" to me ( the evidence was right there in writing ) that you don’t have to stay stuck. There’s no such thing as a dead end. You don't have to give up.

Hope.

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You may have guessed that that hope machine predated the Internet. Both parties to the transaction used typewriters and twenty cent stamps; the whole process took a couple of weeks.

Nowadays…

What with today’s digital infrastructure, you can pretty much do everything we did then in a matter of seconds. You can search for and find hope online – by going, for example, to www.livestrong.org.

Or to www.redtreehouse.org. 
Or to www.ucp.org.  

The second and third have been on my radar of late because of my interest in knowledge flows in the CP world, and, because of some specific initiatives they’ve independently launched.

The organization behind www.ucp.org I’ve known about for some time: United Cerebral Palsy (UCP) and its nearly 100 affiliates have "a mission to advance the independence, productivity and full citizenship of people with a spectrum of disabilities by providing services and support to more than 176,000 children and adults every day—one person at a time, one family at a time.”

As for www.redtreehouse.org, I only recently stumbled on it. Red Treehouse was born of a partnership between Ohio Family and Children First (OFCF) and the Ronald McDonald House® of Cleveland, Inc. (RMH). It was formed for the benefit of kids with chronic illnesses and disabilities to provide an online place for families and professionals to DISCOVER ANSWERS. MAKE CONNECTIONS. FIND HOPE.

Although they have different ways of saying it, these organizations have taken it upon themselves to become significant sources of inspiration and empowerment. They're hope-machines-in-the-making. I’m very interested in what they're striving to do. Especially as it relates to their efforts to harness the power of the Net to those ends.

That's what I hope to explore via a series of posts. I have some ideas about the analyzing lenses I'd like to look through. I don't, on the other hand, have many ideas about where things may lead. 

I only hope -- myself -- to be helpful along the way, 'cause I'm supportive of both organizations.

Rose-Would-Be-Twenty Rant

Okay. Here’s a little o’ what I mean when I assert that the Net is a downright mess:

The low glycemic index treatment (LGIT) is a dietary approach to treating seizures. I’ve come to think of it as an interesting-to-promising option. 

It'd been awhile since I’d last looked into it online (What's the latest? Is there cause to be more or less interested in exploring it for my daughter?) so I headed, virtually, to the MassGeneral Hospital for Children's Pediatric Epilepsy Program, home to Dr. Elizabeth Thiele and Heidi Pfeifer, co-developers of LGIT. 

To my dissatisfaction, there was no new news to be had. Not only was there no new news, on closer inspection I noticed that the content there "was last reviewed on November 20, 2006.” (This is a gorgeous and informative site, by the way, a production of WGBH [Boston public broadcasting].)  


2006! 

The site contains a section on seizure treatments that features a video about a fourteen year-old named Rose and her successful experience with LGIT. Sure feels outdated when it dawns on you that that little girl (it’s hoped) would be twenty now. Anyone think about following up on her story? Is there nothing the-hospital-as-presumptive-authority-on-the-subject could do to let me know whether or not it’s still in the LGIT business? Throw a guy a link, maybe? 

I know for a fact the aforementioned dynamic duo is still actively researching LGIT. That same other day, I came across an abstract entitled, “Low glycemic index treatment for seizures in Angelman syndrome,” which appears in the July 10, 2012 issue of the journal, Epilepsia. 

The results of their latest work? Encouraging. They suggest that LGIT is a promising treatment option…

But: not without qualification. The kids who were studied have Angelman syndrome. My daughter does not. So, what does this mean for her? Are there broader implications or applications? Where's the research heading? Did Harvard's recent (BAD) protein molecule breakthrough figure in in any way? 

Getting my questions answered is never half as easy as I think it should be. 

IS IT UNREASONABLE of me to expect to be able to find a decent answer to the question “What’s the latest on LGIT?” Or, similarly, to “What’s the current thinking surrounding intensive therapy?” (On my efforts to answer that -- and on my underwhelming findings -- see My Kind of IT: Continued.) Where do things stand with regard to aquatic therapy? The only thing I’ve ever found of substance is a benumbing Best Evidence Statement (BES[t]) put out by Cincinnati Children's Hospital over two-and-a-half years ago.

Is this the BES[t] we can do? 

What it'll likely take in order for me to connect with know-how -- pick any of the three approaches I just referenced -- I'll be able to apply directly to my daughter’s situation? Who knows. I’ll make some calls. I’ll spend hours trying to track down the people who used to be involved, hoping they’re still where they were and still in the same line o' work. I’ll try to figure out if this or that program is still being funded, or if research is ongoing…

What is this?

Well, aside from disheartening, it's: "always something." And patients and caregivers are always the last to know. 

What is this? 

Maybe it's time to realize the Net’s still a far cry from being as patient friendly as one would hope; time to spend less time online. Maybe it's time to rethink the mix of social tools we're choosing and using. Maybe it's time to try and do something to help make the Net a better place for knowledge.

I'm not sure.

A Patient-Pull Model

“I’m going to paint the picture of how we can go from a doctor-push model to a patient-pull model. It will work with any health-care system in the world, empowering patients to take much more control over their health outcomes.”

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In Pull: The Power of the Semantic Web to Transform Your Business, David Siegel makes the case that doctors are at the front and center of our current health-care system, but that the balance of power could and should be shifted to the patient. While I don't ever think of her as the latter, that's my child he's referring to. Or maybe yours. 

Patients are already gaining traction. They're (we're) self-diagnosing and self-prescribing. They're (we're) shifting from being mere consumers to being providers of health-care information. Blogs, Wikipedia contributions, online articles, comments, online communities, anecdotes, and more are all playing a part. But the development of a truly smart network, one in which a patient is able to draw whatever knowledge resources she needs directly to her, will require a new Web infrastructure based on new principles and mechanisms --

Enter stage right Mr. Siegel's (and others') semantic web. 

Here’s a link to Wikipedia’s semantic web page. It’s a little futuristic, a little sci-fi, but worth bringing up, I think. Why? Because there may well be things we can do now to help inch our way closer to a smarter, more productive Net. Smarter and more productive are better for the kids we're trying to help.

A COUPLE OF KEY (SEMANTIC WEB) INGREDIENTS

1. The Personal Data Locker 

“Let’s suppose,” I say, “that every patient now has an online personal data locker. All the patient’s health history and records are there. The patient has plenty of privacy…(and) he’s actively involved in the process of learning about his health, record keeping, and understanding his options.”

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The personal data locker will store all of your information in the cloud. It’ll replace your desktop computer. It’ll act as the brains behind your phone and the rest of the smart objects in your life. As it relates to things medical, our sex, weight, BMI, blood type, ethnicity, family history, blood tests, and other data (that doctors already use) will be stored therein. Fairly soon, many people will add their entire genetic code and the codes of any known disease agents in their bodies. 

All this information, labeled using standardized formats, i.e., specified semantically, becomes the basis for pulling knowledge resources to you. Our software agents will be able to look for products and services online or the search engines will make matches and bring us the results. Writes Siegel, “I only set my wants up once and turn them off when I find what I’m looking for (or when it finds me). The more you use your data locker, the more it extends your eyes and ears to places you never would have noticed, it’s always under your control, acting as your personal helper, not your alter ego.”

2. Power Tagging

“We will use a variety of automated tools, sensors, other people, and special-purpose devices that let us power-tag our way through our days…”

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Power tagging is recording real-time, real-world facts and events using common rules and vocabularies in a format that means the same thing to all systems. It helps you keep your semantic web of information up to date and working for all the people around you. If and when everyone is tagging, systems will "know" what’s happening in the real world and people will be able to pull the information through.

Applied to health care, the more data we collect in standard formats, the better we can help researchers find the next treatment. Once patients are power tagging, they will form their own research communities, reach out to drug and device companies, and pull new products through according to their needs. Patients will create online ecosystems of patient data that researchers can filter for trends, patterns, and new insights…

QUESTIONS, QUESTIONS

General: 

Even though the web as we know it has not (yet?) evolved into the semantic web others envision, could personal data lockers and power tagging be implemented today? If not, could we put the underlying principles to use? How might doing so begin to pay off for my daughter? 

Particular: 

I'm thinking ahead to the kinds of medical data that might reside in the personal data locker of a little girl with CP. What specific instruments and information sources would be pertinent? Her IHP? (Individual Habilitation Plan) Her psychological and physical exam records? (including chart reviews; observations; parent interviews; Bayley Scales of Infant and Toddler Development; Cognitive, Language & Motor Scales; caregiver rating forms)  

I was just all over the web investigating various orthotic devices. (See my Making Sense series of posts.) How might an exercise like that be improved once we start pulling information?

Throw Yourself A Curve

It’s OKAY that you spent the last two months of your life hooked on The Bachelorette. What’s done is done. Now, though, for some reality TV really worth watching, I want to recommend something completely different:

PBS’s Charlie Rose: The Brain Series. Wherein Charlie Rose, Nobel laureate Eric R. Kandel, and a revolving cast of (typically) three or four other panelists explore different aspects of the brain. Amongst the panelists are some of the finest scientists going. Luckily for viewers, these men and women are also ENTHUSIASTIC -- pretty much across the board -- and CAREFUL AS CAN BE to make what's esoteric c-o-m-p-r-e-h-e-n-s-i-b-l-e to regular people. 

I’ve found the episodes to this point to be riveting. And never quite long enough. Cerebral palsy has hardly been mentioned, but learning about the brain-boggling advances we’re making in our efforts to understand "what’s going on inside our heads" has still left me feeling inspired. Every time.

All twenty-three (23) of the approximately one-hour-long previous episodes are available online at: http://www.charlierose.com/view/collection/10702. Episodes are also available as DVDs.

It's Knowledge Work You're Doing

In the opinion of David Weinberger, author of Too Big To Know and “one of the most important thinkers of the digital age*,” we ain’t there yet. The networking of knowledge is not yet the blessing it might someday be, and we'll need to do more, he says, to help the Net live up to its potential. (as the place for people to go to get smarter faster and to [in turn] get more productive) As it relates to what I'm most concerned about: There's no reason the Net couldn't be a much better place for empowering and enabling the disabled.

Here are some actions people of all stripes can take...while online, starting now...to become better knowledge workers and help bring about a smarter Net. These represent three of Mr. Weinberger's five parting suggestions.

LINK

“More links, more links.” Links encourage and help others to chase their interests. Links enable us to be transparent about how we reached a conclusion. Links increase the authority of a work. Links promote independent thinking.

LABEL

(I get a kick out of this:) In Weinberger’s words, “Most of what’s posted will be crap. So, we need ways to evaluate and filter, which can be especially difficult since what is crap for one effort may be gold for another.”

Ironically enough, the antidote to the crappy-information overload problem is to provide information about the information we contribute. Metadata (think "labels", like the ones that appear at the bottom of this post) enables your information to be found more easily, i.e., it makes your information reusable. If and when we can get to the point where we’re labeling all of our information using standardized formats, we’ll be on our way to realizing the vision of the semantic web. Computers would then be able to do more of our filtering for us and the Net would spit out a lot more knowledge than was put into it. We'd have ourselves a truly smart network.

LEARN

For the Net to be all it can be, we'll all need to learn how to: 

Operate the dang thing. (the Net and its component parts, that is) Really just a matter of clicking buttons. Simple as ABC. 

Evaluate knowledge claims. The ones others make, and the ones we make ourselves. Critical thinking skills to shore up? Being able to "distinguish lying crap from well-documented conclusions." Becoming more open to new ideas. Learning how to participate in multi-way, multi-cultural conversations. 

Learn to love difference. We need to "push past our urge to stick with people like us." Easier said than done, but the author sees in the Net both an opportunity ("to encounter and interact with that which is different") and a model ("we can understand ourselves as a Web page interpenetrated with links, connected to a world that takes us up and makes us interesting.”).

All o' this is applicable when we blog, leave comments, contribute to Wikipedia, rate  products…

*per Daniel Pink