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?

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

Getting Smarter Faster

We thus do not yet have any good idea 

of what cannot be done by connected humans 

when working at the scale of the Net.*

Sure would be nice to be able to broadcast to the world “Here’s a description of my precious little girl. She wants to live a life without limits.** We’re looking for knowledge and related resources we can use.” -- and to have what she needs come streamin’ in: automatically, continuously, and right on target.

What kinds of knowledge and resources? Well, answers to all the questions I have in mind to ask; ideas and information that hadn't previously occurred to me to look for; opportunities to collaborate with others to create new knowledge...

I want my daughter to be an epicenter for these heady things. 

I’ve read enough books filled with enough accounts of effective, real-world "pulling" to believe she could be. Here's a wee bit about three (3) such books worth noting as they relate to our discussion:

• Pull: The Power of the Semantic Web to Transform Your Business [2009] by David Siegel. The so-called semantic web is “a new way of packaging information to make it much more useful and reusable.” It represents a vision (at this point) of what the Net could become, i.e., an extremely powerful tool for getting what we need when we need it.

• Too Big To Know [2011] by David Weinberger. Everything you ever wanted to know about knowledge in our new networked world. Among many other things pull-related, Mr. Weinberger writes thoughtfully about strategies for filtering knowledge (forward) in order to successfully keep on keepin’ on. 

• The Power of Pull [2010] by John Hagel, John Seely Brown and Lang Davison. About ways individuals, teams and other groups are using pull techniques to their advantage. I’m most interested in what they have to say about "shaping strategies," which have to do with motivating big groups of people and institutions to work together to solve problems.

The notion that we can use the Net to perform better -- i.e., be more efficient, learn faster, and have greater impact -- runs through each book. Hagel, Brown and Davison, in particular, talk in terms of “increasing the rate at which we can improve performance.”

How might "performance" enter in when we're talking about CP? In countless ways, I'm sure, but what matters most is how well our kids are performing.

I wonder: 

• Can we use the Net to help more kids with CP achieve more than anyone's ever dreamed possible?

• How quickly can we get to the point where we’re laughing at the very things that are limiting our kids today? 

• Could it be that what holds our kids back the most are our limited capacities as adults to learn and imagine better ways of doing things?

*from Too Big To Know
** "For people with a spectrum of disabilities, life should be without limits" comes from United Cerebral Palsy (UCP).

 

Push Me Pull You

This is: 

• The BEST OF TIMES to be a parent of a child with CP because there’s more KNOW-HOW & KNOW-WHAT out there than ever before, and because we have access, potentially, electronically, to just about all of it. “There are many voices available to us,” I read somewhere. May be a bit of an understatement.

This is also:

• The WORST OF TIMES to be a parent who wants to get SMARTER because the WORLD WIDE NET is a downright mess. Anyone with anything to say about CP is on it. Every one of those anyones -- me included -- just keeps adding to the search results stew. MAKING ONE'S WAY THROUGH TO THE GOOD STUFF CAN BE FRUSTRATING.

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I'm exaggerating about the mess. And, I also know that I’d need to be much more specific (about what I see as being messy) to be taken seriously. I won’t try to remedy that now.

I will put it out there, though, that I THINK IT COULD AND SHOULD BE EASIER to get to the good stuff, and that the online experience -- instead of being about “pulling teeth” -- could and should be about: 

( J U S T )  P U L L I N G. 

Pulling, or just "pull", has broadly to do with getting the information we need when we need it. It has to do with causing the good stuff to come to you rather than you having to go to it.

I have a strong sense that pull approaches to harnessing knowledge flows can help us, individually and collectively, to get smarter faster. We within the CP sphere owe it to our kids to explore how.