Live from the 2003 Fall AMIA Conference

The goings on so far at the 2003 Fall AMIA conference is a tutorial on FOSS Sunday that I was not able to attend. Monday was the AAFP Open Source EMR panel discussion, Open Source posters and the Linux Medical News Award presentation. I’ll be reporting on the winner soon. What follows are some quotes from the AAFP panel. Here are a few choice ones, Read More to see who said them: ‘…The project never really was open source…success in the dissemination of these systems has not succeeded…Open source is not the programs, but the data in the record itself…true open source may no longer be feasible…enormous danger in multiple users tampering with complex code and that was never in the plan…It didn’t work for a number of reasons best left up to the other medical societies…But by that time, we couldn’t quit…’15 programmers, outside of health care said: can we help?…What we have come up with, we’ll see whether it works or not, a set of principles around which to organize…they are very simple, obvious…finally an opportunity for open source…The difference between those who fail and those who succeeed is largely perseverance.’

David Kibbe, MD — Center for Health information Technology, at the time of registration, there was a good possibility that they would be distributing a FOSS EMR, that may still happen, but an overview of what may happen from then on. Wednesday AAFP – 9 IT companies, coalition around a set of principles. 2005 all family physicians would be using EMR. The EMR is ‘always 3 years away’. 85-90% do use the Internet for their practices in AAFP. Saying ‘We need a breakthrough, the market is not responding.’ Built survey around barriers, lack of standards, lack of sustainability, distrust of the companies. Brought idea and some software around MedPlexus of FOSS to directors of AAFP and they said ‘that is reasonable, lets give it a try.’ Endorsement of a new non-profit organization with involvement of other medical societies. ‘It didn’t work for a number of reasons best left up to the other medical societies.’ ‘But by that time, we couldn’t quit.’ Over 6000 contacted Kibbe and said this is a great idea, keep going. ‘The strictly open source way wasn’t going to work.’ ‘We couldn’t go it alone, we had to attract the medical societies, programming communities outside of medicine.’ ’15 programmers, outside of health care said: can we help?’ ‘What is plan B? This may be the phoenix, the next step for creating a more open standard for interoperability and compatibility.’ ‘It was very important to their companies …that doctors get connected.’ ‘What we have come up with, we’ll see whether it works or not, a set of principles around which to organize…they are very simple, obvious. The first one is: affordability. One of the big problems is cost. The second is compatibility, especially from the point of view of interfaces. If I buy a health care record, I ought not to have to scrap everything I own…there should be a standardized way of getting labs and eprescribing. Interoperability: there should be a way to exchange records…In that regard, we got involved with a continuity of care record. It was interesting that these principles are not just ‘sign up and go away’ but continuing to work with us to see that they are put into action. The fourth is data stewardship…which is really about control…Within the HIPAA framework, patients should have control over what data is bought and sold…We are not saying that we should be the repository, but we are putting a stake in the ground saying we need to talk about this.’ ‘This will become an increasingly important issue as doctors office becomes more computerized, especially with the asp model.’ ‘We have replaced a strictly ‘open source’ solution to an ‘open standards’ solution…If we can accomplish this, we will have accomplished a lot.’

Was it a quality control issue? No.

A. E. Zuckerman ‘The project never really was open source…success in the dissemination of these systems has not succeeded. Is open source the answer to the barriers?…Open source is not the programs, but the data in the record itself…true open source may no longer be feasible…enormous danger in multiple users tampering with complex code and that was never in the plan…open source data record standard is the key to interoperability…’

Mike Bainbridge – Integrated Care Records – ‘finally an opportunity for open source’. Integrated care record for all 50 million records in england. All electronic booking, prescriptions and infrastructure. Divide the country up into 5 clusters of 10 million patients each. Will be getting vendors to supply everything for the IT infrastructure of each cluster. 13 million patients/year. 25 year lead-in, ‘Information for Health’ document September 1988, Vendor standards in 1994, 70 out of 30,000 are NOT computerized. 95% of all prescriptions are produced electronically from clinical information systems. We are almost in the position to transfer records electronically. Patient and clinically focused program. ICRS Integrated Care Record Service to share data from a national repository known as ‘the spine’, single point of information, all medical records will be kept on ‘the spine’. Largest single IT procurement programmes in the world. 17 bidders including large American suppliers. They will be working to our specifications. LSP’s will manage multiple partners/vendors, will use HL7 v3, SNOMED CT, Decision support/knowledge management framework and local standards. Release 2 December 2004, phase 3 December 2008. Trying to break down a lot of barriers. Data will be available for the patient to access over the Internet. Semantic Coherence between systems, between clusters, across the NHS, across the EU, global connectivity, collaboration and speed, global surveillance? Command and Control where necessary, project management ‘top of the office’ Tsar, Application Style Guide, Prescribing, list views, Picking list behaviour, Alerts, drug/drug interaction, care pathways, decision support, knowledge management. ‘It is inappropriate for one set of behaviors to happen on one system and not on another.’ Modernized Infrastructure Primary Care IT, 100% funding, ownership and liability by employing system, If successful, potential adoption in many countries, threat and opportunity, published standards and output based specification, Interoperability focus, patient focus means we can take no other approach.

John Zapp Past Chair, Primary Care Informatics WG, AMIA, Founding Chair, National Alliance for Primary Care Informatics. Majority of patient care in the US is delivered by primary care providers outside academic medical centers in small practices. Primary Care providers manage complex infromation and still use paper, pencil and recall memory. We don’t have the right tools. SNOMED CT, HL7 v 3, IOM, NHII reflect an accelerated process which could be enabling OR threateing to primary care’s IT solutions. Picking the “wrong system” is very risky. Vendors: lack of standards inhibit product development, lack of standards inhibits entry of open source, lack of interoperability inhibits user investment, cost of hardware and software is a barrier. Payers – no funding for technology purchase and implementation for small practices, educators: still teaching a memory-based approach to knowledge access for patient care. Need to teach EMR, decision support, outcomes studies and patient involvement in medical school, residencies and beyond (just in time information) Improving information support: PDA’s, ‘immediate adoption’ but making progress. Global connectivity collaboration and speed – Julie Gerbering, National Alliance for Primary Care Informatics – one voice for Primary care infromatics: November 2000 Summit – non-profit organization status NAPCI, A Proposal for Electronic Medical Records in Primary Care JAMIA. Motivations for having a usable electronic medical record. Business meeting within 6 months. Need tools that work, not more regulations. ‘We’ve beat over the head with more and more regulations.’ Applaud AAFP Open Source initiative with the key attributes of being Affordable, Compatible, Interoperable, Data Stewardship. The Future: Imagine standards-based EMRs that provide data sharing and communication, decision support, switch to another EMR product, improve patient safety and care, allow outcomes studies, reduce repititious work and cost, ‘Passion is the great slayer of adversity’. ‘The difference between those who fail and those who succeeed is largely perseverance.’

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