Open Source the Nationwide Health Information Network

I've been catching up on some missed news what with all the travel lately, and I found some bits and pieces that will make it into the next update of my consumer health information presentation.

I'm not sure whether we're looking at an age gap, a technology gap, or simple Ludditism, but whichever it is it needs to be addressed sooner rather than later.

More and more I'm seeing reports talking about what consumers want and expect from electronic medical records. Markle released a study in December of 2006 that reports "Two-thirds of the public (65%) is interested in accessing their own personal health information electronically".

Overall, the survey findings point to consumers wanting control over who has access to their records and being concerned about potential privacy issues.

In a February 2007 prepared statement to the Subcommittee on Oversight of Government Management, Markle's Connecting For Health Chair Carol Diamond underlines these concerns and neatly summarizes the problem: consumers want doctors to have access to their records, but consumers want control and oversight over the doctors who see their records.

Markle has an excellent paper on A Common Framework for Networked Personal Health Information which details the common, standards manner in which health information networks should be structured, including my own favourite; distributed data.

The first paragraph of the paper is especially informative:

"The average person’s ability to access data and communicate electronically is proliferating exponentially. Consumer adoption of digitally networked services has transformed the culture of many industries — often in ways
unimaginable barely a decade ago."

Unfortunately, the physician practice, and maybe the physician, hasn't kept up. The same physician who checks his stocks online, obtains electronic CME credit and can book a tee time from the course Web site still doesn't want his patients E-mailing him.

In the presentations I give, I hear push back from the older physicians and excitement from the younger ones. I think it's a simple fact of life, you can't change business practices wholesale. These docs have been doing business without electronic data exchange for decades, it's too much to ask them to lead the way.

As I say time and again, this is not necessarily a bad thing. On the one hand, health care is behind the times. On the other, the industry at large has a golden opportunity to learn from the mistakes of all the industries that *have* adopted electronic information networks as a core of their business.

We have this amazing opportunity to do it right the first time.

The gap, as I see it, is simply that consumers are now way more information-savvy than the health care industry; and the Nationwide Health Information Network (NHIN) doesn't seem to be going down the obvious path of not reinventing the wheel.

My major gripe is the whole *Regional* part of Regional Health Information Networks.

I know this is America and the land of free market and a (perceived) hands-off federal government, but the above survey bears out my belief that this is one instance where the feds should step in and say "this is how you're going to share data, this is how you're going to protect it".

Instead, we have dozens of almost-faceless organisations around the country trying to figure it out as they go, often formed by budget- and market-conscious hospital and physician groups who are the very people we're trying to change, the very people who have spent decades not sharing data with each other.

We have standards. We have lessons learned. We have vast repositories of open, transparent software that can be utilised. We have entire industries including finance and travel that have trodden this path. I don't feel like we're learning from them.

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AHIMA just released a report that essentially says the same thing. RHIOs, state-level HIEs and the feds just aren't doing enough to coordinate the effort. Some highlights:

"Currently, there is little sharing of lessons learned, products (e.g., business agreements, policies, service contracts), and services between the NHIN contractors and the state-level HIEs beyond those states directly involved in the NHIN contract projects."

"There is no central authority that: (1) is accountable for ensuring that HIT is directed toward transforming healthcare, or measuring progress against that goal; or (2) makes key HIT adoption-related decisions, such as resolving disputes among collaborating entities."

"In summary, there is an understanding of how standards harmonization, certification compliance, security and privacy collaboration, and NHIN prototyping all relate strategically to the acceleration of HIT adoption. However, the disconnects among these tactical projects create the perception of multiple efforts directed at individual issues with no overarching strategic plan connecting them."

Linux and Perl figured this out a long time ago. The free and open source software community has a long established tradition of organised adhocracies and distributed development with benevolent dictator oversight.

And yet we seem to be building a national infrastructure like it's 1980; industry-facing, industry-led and industry-serving. I guess it's like those Microsoft / Apple ads. One's the stodgy business type, the other is user-friendly and cool.

AHIC has empanelled a Consumer Empowerment Workgroup, but my bet is the first hurdle will be showing a business case to the HIE/RHIO community that makes it worth their while. It's not anyone's fault, as long as we have disparate entities coming up with infrastructure there'll be no sustainable model for them to invest in providing the patient empowerment in the first place. You can't blame them for not doing it.

We're deep into Web 2.0 and the promise of a semantic Web that delivers on the promise of true user interaction and vastly improved user participation. Let's build a national health infrastructure that acknowledges this, that is people-facing, patient-focussed, open, transparent and accountable.

The culture clash of a closed-source industry such as health care and the open, transparent goals of a national health information network cannot be solved by throwing millions of dollars at closed-source vendors like Northrop Grumman.

Open source is what built and maintains the World Wide Web you're reading this article on, it's the foundation of the Internet, and we manage to keep it up just about 24/7. Everyone seems to like how it works. Open source delivers your E-mail, uploads your photos, gets you your credit card statement and let's you pay bills online.

I'm not saying we should hand the NHIN over to Silicon Valley or the open source community, but we might want to ask them to join the discussion.

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Further reading: Open source vs. closed source (Wikipedia) and The Cathedral and the Bazaar.‎