Who Owns My Healthcare Data?

In late 2006 Shahid Shah invited me to submit a guest article to his blog, The Healthcare IT Guy blog.

I was pleased to accept his invitation and here's the introduction made by Shahid:

"Healthcare data ownership is an important issue and I was pleased to run across Pardalis, a company specializing it. Although they don’t focus only on healthcare, they intrigued me because they appear to be a cross between a nascent supply chain Google, eBay, and author-controlled Wikipedia. That is, they claim to be able to increase availability of on-demand healthcare information (which lots of companies are doing) but they provide real-time control over the process of sharing such information to patients and healthcare information producers (which very few allow today). It’s unique enough that they’ve recently been awarded a couple of patents. Pardalis is company worth keeping an eye on because if they can achieve even part of what they plan it could lead to a practical realization of software as a service that might give more than just lip service to privacy and be able to address the economic realities of ‘data ownership’. I invited Pardalis’ founder and CEO, Steve Holcombe, to discuss why he believes healthcare informatics seems be trapped within a technological Tower of Babel."

 And here's the link to my guest article entitled Who Owns My Healthcare Data?

The Issue of Information Ownership

Ahmed ElAmin is a business writer of over 20 years' standing specialising in development issues, technology, international business and offshore finance. He currently serves as the editor of FoodProductionDaily.com.

In May, 2007 Ahmed published an article about data ownership in The Royal Gazette after reading my white paper, Banking on Granular Information Ownership. Here's the introductory paragraph to Ahmed's article:

"Could we treat data as if it were money, private objects that can be deposited, exchanged, managed, and protected? This is the concept Steve Holcombe, CEO of Pardalis, put to me by e-mail after reading one of my articles on proposed EU legislation to limit the use of radio frequency identification technology (RFID)."

 To see Ahmed's article in its entirety, go to The Issue of Information Ownership.

Everywhere and nowhere

The following is my comment submitted to the Economist.com regarding their article Everywhere and nowhere published March 19, 2008.

The premise of the article is that "[s]ocial networking will become a ubiquitous feature of online life [but t]hat does not mean it is a business".

"Online companies like Facebook and MySpace employ solutions to disclose how they handle people's information. However, little direct, on-demand control is provided to the actual owners of the information. This is the niche in which these online companies can truly provide a service for which people and businesses are willing to pay.

People want to share their entire personal health records with a personal physician but only share precise, granular parts of it with an impersonal insurance company. But ‘fear factors’ are still keeping people from becoming comfortable with posting their personal health information into online accounts.

In an age when international product supply chains are providing dangerous toys and potential ‘mad cow’ meat products to unsuspecting consumers, the manufacturers of safe products want to differentiate themselves from the manufacturers of unsafe products. But, again, fear factors keep the good manufacturers from posting information online that may put them at a competitive disadvantage to downstream competitors.

The business opportunity is for the Facebooks and the MySpaces of the world to provide their users with data ownership’controls for granularly monitoring and tracking the use of their information as it is shared one-step, two-steps, three-steps, etc., down a business supply chain, or likewise within a network of strangers."

Ownership Principles for Database Design

Here is one of my favorite data ownership references published by the MIT Sloan School, Cambridge, Massachusetts:

Why Not One Big Database? Ownership Principles for Database Design (by Marshall Van Alstyne, Erik Brynjolfsson and Stuart Madnick) Copyright © 1993, 1994 Van Alstyne, Brynjolfsson, and Madnick, All Rights Reserved

Some quotes I love from this publication:

“Design Principle 5 : No amount of standardization is sufficient to ensure new data availability.”

“The fundamental point of this research is that ownership matters. Any group that provides data to other parts of an organization requires compensation for being the source of that data. When it is impossible to provide an explicit contract that rewards those who create and maintain data, "ownership" will be the best way to provide incentives. Otherwise, and despite the best available technology, an organization has not chosen its best incentives and the subtle intangible costs of low effort will appear as distorted, missing, or unusable data. Decentralization concerns equipment and development, but it also concerns intangible issues of ownership and control.” (emphasis added)

If the foregoing peaks your interest, here is the abstract summary:

“This research proposes database decentralization and incentive principles which drive information sharing and ultimately system performance. Existing research has identified the benefits of centralized control while formalizing the importance of setting standards, enhancing user transparency, and reducing organization-wide data inconsistency. In practice, however, many centralization and standardization efforts have failed, typically because departments lacked incentives or needed greater local autonomy. While "ownership" has often been described as the key to providing incentives, these motivational factors have largely eluded formal characterization. Using an incomplete contracts approach from economics, we model the costs and benefits of decentralization, including critical intangible factors, by explicitly considering the role of data "ownership." There are two principal contributions from the approach taken here. First, it provides rigorous mathematical definitions and a framework for analyzing the incentive costs and benefits arising from database decentralization. Second, this theoretical framework leads to the development of a concrete model and eight normative principles for improved database design. Applications of this theory are also illustrated through case histories.” (emphasis added)

Keywords : Database Design, Centralization, Decentralization, Distributed Databases, Ownership, Incomplete Contracts, Incentives, Economic Modeling

The Funding of the Emerging Semantic Web

The dam is finally beginning to break on the funding for the emerging Semantic Web. The conventional wisdom in Silicon Valley is that a more powerful, integrated Web is about to emerge, where data about information is much more structured than it is today. The $42.4M invested in Metaweb Technologies in January, 2008 was led in by Silicon Valley’s Benchmark Capital and the venerable, Wall Street investment banking firm of Goldman Sachs.

Metaweb Technologies characterizes its ‘Knowledge web’ as a massive, collaboratively-edited database (like Wikipedia) of cross-linked data. In the future, its founder, Danny Hillis, hopes to generate business revenue by providing means for the ownership of information on the Internet. However, Metaweb holds a thin intellectual property portfolio. Metaweb’s founder began globally filing patents in 2001. Before $15M was raised in March, 2006, he did not keep up the patent application fees. Only one of those patent applications (US Patent Application 20050086188) for “Knowledge web” remains. The patent fees have been paid and it will issue this spring so congratulations to Mr. Hillis are certainly in order. It’s always a happy day when a patent issues. But the Knowledge Web patent will only be enforceable within U.S. borders. And, even then, do the claims cover the authoring of structured data without the necessity of Wikepedia-like collaboration? I ask this question because a critical characteristic of ownership must certainly revolve the choice of non-collaboration.

The investment is considerable even though Metaweb is pre-revenue. But the bottom line is that it is now possible to assign a very real return on investment to Semantic Web technologies.

Update on Thursday, March 20, 2008 at 9:05AM by Steve Holcombe

Twine, another pre-revenue San Francisco start-up, may be the next, next big thing after Metaweb when it comes to the funding of the Semantic Web. Series A funding of $5M was landed in 2006. Series B funding of $15M-$20M was apparently finalized in February, 2008. Twine’s bankable founder, Nova Spivack, says Twine is more like a semantic Facebook while Metaweb is more like a semantic Wikipedia.

Twine’s business model is to provide a Facebook-like interface for the purpose of deepening data connections between networked users. Will connections be ontologically deepened between networked users without their permission? We’ll just have to see how that plays out. One would think that Twine would philosophically lean much more than Metaweb toward providing data owners with non-collaborative control over the data and information.

Twine holds four pending U.S. patent applications (US Patent Application 20040158455, US Patent Application 20040220893, US Patent Application 20040230676, and US Patent Application 20060004703).

Update on Friday, April 18, 2008 at 8:53AM by Steve Holcombe

Here's a video clip interview of Novack Spivack, CEO of both Radar Networks and Twine, made on April 4, 2008.

Learning from the Future with Nova Spivack from Maarten on Vimeo.

 
Notice in the interview that Spivack opines that the Web is moving toward becoming 'one big database' though he makes no mention of the importance of data ownership to facilitating this move.

See, by comparison, Ownership Principles for Database Design which specifically addresses the question, "Why not one big database?".

Update on Thursday, June 19, 2008 at 8:15PM by Steve Holcombe

See also Nova Spivack: Making Sense of the Semantic Web ...

 

Update on Friday, July 16, 2010 at 5:15PM by Steve Holcombe

Tweeted this today -

Google Makes Major #Semantic Web Play | #semweb #freebase #metaweb #dataweb #data #searchengine http://lnkd.in/WPi9Qi