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?