'Open Source' Personal Health Record (PHR) System

I have been a long time fan and supporter of the My HealtheVet PHR.  It is a great tool, an innovative addition to VistA that was needed to better connect and serve our veterans/patients.  What bothered me was not the functionality, but the extensive use of commercial software packages and vendors to create this solution.  This would be a great area to consider moving to a true open source PHR solution.  There are several out there.  One solution is the My HealtheMountaineer (also known as My HealtheMe) system developed and being deployed in West Virginia. It is open source, standards based, incorporated the functionality of My HealtheVet, and interfaces well with VistA, RPMS, and many other EHR systems.  I hope one of the next projects, after addressing architecture/infrastructure issues, will be to start up the open PHR project. This along with the Genomics module for VistA, would greatly enhance VistA/OSEHRA and carry it well into the 2020's.

Excuse me if I haven't submitted this to the right group. The Future projects link is not working/activated for some reason.

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Comments

This looks very interesting...

Tom Munnecke's picture

I'd sure like to see this .... and if we look at it from a "good enough" standpoint, subject to further open source evolution...

Here are some of my thoughts on the PHR from way back: http://healthpopuli.com/2007/10/04/health-data-vault-circa-1999/

And can you point me to the Genomics module for VistA?  I'm extremely interested in genomics.  I've done mulit-mililon pair SNP testing on 18 members over 4 generations of my family, and just sent off two more full exome family samples with 23andMe.  (my daughter is dir of R&D of Pathway Genomics, and I'm on their advisory board). Here's a video interview I did of Esther Dyson on the PHR and personal genomics : http://munnecke.com/blog/?p=229 and an after dinner conversation with Patient Privacy Rights dynamo Deborah Peel's reaction to the privacy implications of it: http://munnecke.com/blog/?p=789 

San Diego is a hotbed of this kind of stuff.  Folks might be interested in the Future of Genomics Medicine Conference Mar 2 http://www.scripps.org/events/future-of-genomic-medicine-v

And here is MIT prof Peter Szolovitz talking about his work leading up to PHR.  http://www.youtube.com/watch?v=xWwnNyK978U  I arranged a meeting with Pete, Tim Berners-Lee (web creator), Rob Kolodner, and other architects back in the early days (when I had to explain what the web was) which Rob credits as being seminal to My HealtheVet...

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Personal genomes in the EHR

Gerald Higgins's picture

Tom-

Thank-you for your feedback, and your wealth of experience. I started the 'Genomics' group in OSEHRA, and have a backgrond in the implementation of personal genomic data into Electronic Health Records and in CPOEs, both at Johns Hopkins Hospital and at Partner's Healthcare. I currently serve as Professor of Genome Informatics at Beth Israel Deaconess Hospital in Boston, but spend most of my time down here in DC working as VP, Pharmacogenomic Science for AssureRx Health, Inc (www.asurerxhealth.com). My specialty is the analysis of polymorphisms in pharmacockinetic and pharmacodynamic genes that make an individual more susceptible to PTSD, and convey treatment resistance, especially with regards to returning Veterans from OIF and OEF.

I certainly am aware of Pathway Genomics and of Esther Dyson.

I also work for GenomeQuest and as a consultant for NHGRI/NIH. I had my genome sequenced, and did the analysis. The most surprising result was the concordance between my mother's SNPs, as defined by 23andMe, and my genome.

My passion is the integration of genomics in the EHR, be it raw sequence data (a requirement of the FDA), genotype/SNP data, or whole genome analysis. I am hoping to generate enthusiam in OSEHRA, and more generally for other VA entities like the Million Veteran Program MVP). If anyone knows of someone at the MVP who might be interested in helping to make this work, please let us know.

Kind regards - Gerry Higgins, Ph.D.

 

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