Workshop on "The Science of the Individual" Nov 14 in San Diego

I will be holding a salon-style workshop in San Diego to Nov 14, to take an interdisciplinary look at the "Science of the Individual" looking at some of the issues of personalization and patient-centered design, particularly in light of innovations in genomics and personalized medicine.  http://tomscabana121114.eventbrite.com

I'm holding this in conjunction with Nancy Tomich, managing editor of the Institute for Federal Health Care, which has been holding roundtables and workshops for a decade in the DC area http://www.fedhealthinst.org/  Prior to that, Nancy was editor of US Medicine, who covered the original development of DHCP and CHCS from their earliest inception, see  http://www.youtube.com/watch?v=fv35OmVIkc4

Participants will include authors David Brin (Existence, The Transparent Society) Vernor Vinge ( Rainbow's End, and who coined the term Technological Singularity), Heather Wood Ion, with whom I wrote Creating an Epidemic of Health inspired by Jonas Salk's thinking (Dr. Salk gave Heather is personal journals)

Nancy Tomich and I are teaming up to launch a new series of workshops/roundtables that will be doing a "deep dive" into the foundations of health informatics.  I am particularly interested in understanding some of the mathematical foundations of the MUMPS/FileMan/metadata issues that seem to pop up repeatedly in database design, genomics, semantic web, open systems, evolutionary designs, and organizational issues.  If anyone is interested in this event, let me know...

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Congratulations on the New Workshop/Roundtable Series

Conrad Clyburn's picture

Tom,

Thank you for informing us about the new series with Nancy Tomich.

I had the opportunity to attend and participate in a number of the symposia organized by Nancy Tomich in the National Capital Area, and they were all of the highest quality.

We wish you and Nancy well in this new endeavor.

I am sure it will be successful, and please let us know how we might be of help going forward.

Conrad Clyburn
Director, Community Development
OSEHRA (Open Source EHR Agent), Inc.
900 N. Glebe Road, Suite 4196
Arlington, Virginia 22203

 

 

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thanks, CC

Tom Munnecke's picture

Yes, Nancy Tomich has a long history of workshops in the DC area.  She's moved out to San Diego (has family out here), and we are brainstorming ways of resuming her efforts, perhaps under a more general context than just federal health.

Since I discovered that I was off-topic just about everywhere I went, I started holding my own workshops, preferring a smaller, intimate conversational model in contrast to convention/podium presentations.  I also work on broader topics, such as trust, resilience, self-organization, complexity, etc, which may seem very abstract to those who are focused on fixing the health care system.   Yet trust, (or rather lack of trust) is a major reason we haven't wiped out polio, for example (certain nations distrust the vaccination program as a nefarious plot, for example).

I'm particularly interested in digging down into some of the fundamental assumptions in health informatics - all the way down to their mathematical foundations.   For example, although we all take it for granted, our work is heavily  based on George Boole's thinking, including boolean logic and boolean algebra.  The way we organize taxonomies, functionally decompose a system, normalize a relational database, and structure organization charts are variations on a theoretic construct called a boolean lattice.  We "divide and conquer" ( or factor) complex things by defining properties, and then we then arrange elements in a lattice structure according to those properties from the top-most general structure to the bottom-most specific structure. 

But Wikipedia, Google, and the WWW don't use this lattice model: they have a "top" from which to do a "properties all the way down" decomposition.

I'm hoping that I can figure out a way to express what Frederick Brooks called "conceptual integrity" in systems design, and relate it to current and future designs.  VistA is based on a compositional framework, creating an interactive set of tools and users evolving in a "search/amplify" strategy.  DoD's health IT efforts over the past 40 years have been based on a functional decomposition framework, presuming a top-down framework decided in advance in a "plan/execute" strategy.

This is way too big of a topic for a message in this forum, but this is one topic that I'll be exploring... and which relates to how we deal with genomic information.  Rather than trying to overlay a boolean lattice on genomic information (defining properties such as "junk DNA", BRCA2, or "unknown") we need a richer model that starts with the 4gb information as a blob, on top of which distinctions can be made (kind of like the difference between using a metadata/dictionary FileMan approach rather than a normalized relational database approach.

I suspect that OSEHRA is not interested in these broader issues, and that they touch on issues that are not politically correct, so I plan to wander off into my own world for now.  But if they overlap in some way, I'd be happy to see how.

re:  Dave Whitten's comments about Esther Dyson, David Brin, privacy and 23AndMe:  Yes, I've been following all this intensively for quite some time.  Here is a video interview I did with Esther: http://munnecke.com/blog/?p=229 about personal health records and her decision to release her personal medical information and genomic information.

and here is a conversation I had with Deborah Peel of the Patient Privacy Foundation, as she reacts to Esther's presentation: http://www.youtube.com/watch?v=mYcQNLYe828

And here is David Brin talking about some of these dynamics .. http://www.youtube.com/watch?v=FrHd9l72Abo

I'm an enthusiastic 23AndMe user, and have (at least) 4 generations of my family and 18 family members with the basic testing, and two larger exomes of my family (so far).  They recently bought CureTogether http://curetogether.com/ which is an interesting grass-roots approach to an open model.  Patients Like Me is another http://www.patientslikeme.com/ really interesting model.

I would hope that we could get some of this creative energy into the OSEHRA world, but we have to get beyond the perception that OSEHRA is just a VA jobshop, I think.

 

 

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Relevant website

DAVID Whitten's picture

Tom,

I recently attended a lecture by Esther Dyson, where she mentioned the website https://www.23andme.com/ which looks to be at least tangential to your Workshop.  It is focused on genetics of the individual, and the impact of particular genetics on that individual.

Speaking of data and individuals, it might be worth some discussion to include privacy and efforts to preserve anonymity or pseudonymity. I know David Brin thinks that technology has reached the point where privacy doesn't exist, with his ideas about the Transparent Society. It still seems to me that it is a valuable discussion, nonetheless.

David Whitten

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