Guest Article: Who owns my healthcare data?

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. Here’s what Steve had to say:

Shahid, in this Age of the Internet, patients and consumers are asking how they can easily and securely access and share their personal healthcare information as and when they choose.

Hospitals, healthcare clinics, physicians and other healthcare service providers know that there is no sense in developing a healthcare informatics infrastructure to merely warehouse healthcare information. They also understand that building one huge, integrated informatics infrastructure is impractical, to say the least, and probably impossible in terms of getting everybody to first agree on a common set of standards. But they too are nonetheless asking themselves how they can share the patient information they hold in trust between their respective ‘information silos’ in a manner that provides them with a direct, on-demand choice to audit and control the use of such information in compliance with HIPAA.

The ever increasing reliance upon the Internet in general commerce, the increasing usage of unique identification as applied to pharmaceutical products, and the longtime use of unique social security numbers for identifying patients have converged to raise the level of expectation for on-demand, confidential sharing of information by healthcare information producers and patients. But the political and economic question of ‘Who owns my data?’ is not being answered to their satisfaction and the result is untold quantities of missing, incomplete and untrustworthy information along the complex healthcare supply chain.

Neither enterprise systems, ERP systems, nor web services have assuaged the cacophony of disparate healthcare information technologies that is today’s status quo. Yes, healthcare informatics as it presently exists is seemingly held hostage within a technological Tower of Babel.

Why is this so? Probably for the very best of reasons. Existing enterprise systems, ERP systems and web services all manipulate two-dimensional rows and columns of data sets and/or two-dimensional compositions of data objects. It is reasonable for software engineers to make one-step, iterative improvements to the existing systems to securely provide for the sharing of information without giving technological consideration to complicated, three-dimensional political and economic issues. That is, it is reasonable for the software designers to presume that some day the appropriate industry standards will eventually be hammered out and everybody will just ‘do the right thing’ in terms of information sharing. It is reasonable for technology officers to think only in terms of getting two-dimensional data sets or data objects from point ‘A to Z’ The curious thing is that the cumulative weight of these reasonable decisions have brought us to where we are today.

The short answer to this overwrought, two-dimensional reasonableness is a technological three-dimensional radicalism.

Mind you, leave the existing two-dimensional data systems in place. It is one thing to be radical. It is all together another to be foolish. But in thinking about designing a solution for integrating the existing two-dimensional systems, consider addressing first the political and economic issue of ‘data ownership’ as also a three-dimensional technological challenge. That is to say that the methods that must radically be addressed before any source code is written should provide the choice of on-demand ‘data ownership’ for every patient and healthcare service provider along the complex healthcare industry supply chain.

Here’s the premise. Radical methods of data ownership must add a sophisticated framework for virtually integrating the participants along the healthcare industry supply chain so that they can easily and cost effectively search for and find in real time – permission being granted by the information owner, steward or custodian – just what they are looking for to make better informed healthcare judgments or increase profits.

To lay a three-dimensional foundation for achieving this premise, consider the dynamic combination of these three characteristics:

  1. Unique identification of every authored data element,
  2. Immutability of every authored data element, and
  3. Permanently attributing the identity of the each information producer to each immutable, authored data element

The result is an electronic pedigree per data element that adds a third dimension of ownership to existing two-dimensional data sets and data objects.

How might this be practically accomplished? Think of a centralized, organically flexible database containing a ‘dictionary’ of uniquely identified immutable data elements. No matter in what data format the healthcare information is originally authored, its import and re-authoring at this central database with these uniquely identified, immutable data elements would drive standardization through the common use of the same healthcare dictionary of data elements by the supply chain participants. Furthermore, the granularity of three-dimensional, uniquely identified data elements would provide the choice of unmatched flexibility in their sharing.

Other than three-dimensional standardization and granularity, why else would participants along the healthcare supply chain be drawn to this central dictionary? For a dynamic combination of one or all of the following reasons (which I by no means consider to be a complete list):

  1. the opportunity to directly transform intangible healthcare information into something much more tangible and, as a result, potentially more valuable
  2. the opportunity to bank and use healthcare information in real time in some respects like how we bank and use our own money
  3. the trustworthiness of immutable healthcare information including professional validation as part and parcel of its e-pedigree
  4. the ability to license temporary access to one or more healthcare supply chain participants, and to track and follow the usage of such information in real-time.
  5. the ability to permit access to healthcare information without giving up one’s confidential password
  6. the opportunity by healthcare data owners, stewards and custodians to retain long-term control over data mining

Shahid, thanks again for the opportunity to comment on your blog. For those readers in the San Francisco area, I will be there the week of February 15-19, 2007 to attend and present at the annual meeting of the American Association for the Advancement of Science. For more information, click here. If any of your readers would like to explore an opportunity to m
eet with me personally, I can be reached directly at steve@pardalis.com.

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5 thoughts on “Guest Article: Who owns my healthcare data?

  1. Steve is on the mark here, and it’s worth noting the issues he identifies are similarly applicable across other sectoral supply chains, for example, food and agriculture. As a social scientist interested in these developments, I am particularly curious how traditionally distinct sectoral supply chains (e.g., medical/pharmaceutical and agrifood) will intersect as convergent technologies (e.g., nanotechnology-enabled RfID systems; ‘nutriceuticals’) force them to confront these issues. For example, will one’s genomic profile suggest a nutriceutical-specific diet supported by reduced insurance rates that would first require sophisticated tracking systems such as may be enabled by RfID and emerging micro- and nano-electromechanical identification and tracking systems? With the potential convergence of so many traditionally distinct sectors, whose interests will prevail? I think it’s reasonable to assume that everyone would agree that some form of standardization would be in order, but as always, the real question is ‘whose standards?.’ We see this now in the establishment of numerous and often conflicting educational standards and similarly discordant tracking systems — all in the name of ‘better education,’ ‘international competitiveness,’ etc. Pardalis seems to be leapfrogging a good chunk of this by demonstrating a system that seems on the surface anyway to meet the needs of multiple stakeholder interests, both inside and outside distinct sectoral supply chains.

  2. I have been ask in the Medical transcription field the question:

    Who actually owns our health care records?

    What does that mean to me as a patient?

    Can you help answer this question? I am in Arkansas.

  3. Rebecca,

    Ownership of personal health records on the Internet is both a technological and a political issue. To discuss means for alleviating these critical issues, I have recently authored a white paper (‘Banking on Granular Information Ownership’) proposing new technological choices for people to privately bank and granularly use their personal health records information like they privately bank and granularly use their money.

    You will find a link for downloading this white paper at http://www.pardalis.com/

    Please contact me directly with any further questions.

  4. I recently visited my family physician in the State of Florida who had moved to a new location right across the street from his old location. This Dr. was a member of Health First when I first visited his practice but had gotten out of their organization. I think he is an excellent Dr. and would hope to stay on with him. The problem was when I went to the new location the first thing I was told was that Health First would not “share” the old information with this Dr. now because he was no longer in the Health First network. That means all my records that I had done at the old location are now not available to this Dr. and his staff over the Health First web network. So I had to give a list of all my ailments, med’s and operations again to the PA who placed it in their new program. I was told by someone in the waiting room that another patient had to pay $1 per page for their records from the Health First network. Is there anything a person can do to get access to their records without paying the $1 a page for them? This seems to me to be a really critical issue. Thank you!

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