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Elektroniske Patientjournaler og fri software
Citizen spørger til, hvad der mon sker inden for elektroniske patientjournaler i forlængelse af nyheden om, at folk dør af fejlmedicinering på de danske sygehuse - netop noget, som et effektivt patientjournalsystem ville kunne forebygge.
Vi har tidligere skrevet ret omfattende om dette emne, og dengang brugte vi det som et manende og meget rammende eksempel på fordelene ved fri/open source software: Vi kunne have haft et fungerende, landsdækkende patientjournalsystem i dag, og det for en brøkdel af, hvad vi allerede har betalt for ikke at få det - om man havde tænkt i baner af fri software og havde fået øje på WorldVistA, et frit tilgængeligt system udviklet af den amerikanske "Veteran's Administration".
En nylig artikel i det amerikanske tidsskrift Advance for Health Information Executives bemærker disse fordele ved VistA-systemet, men sætter fokus på et lidt andet område, nemlig ejerskab.
Artiklen fremfører, at de amerikanske læger og patienter ganske enkelt er ved at miste kontrollen med læge- patientrelationen på grund af udviklingen af kolossale, proprietære patientjournalsystemer, hvis eksakte virkemåde ikke kendes, fordi man ikke har adgang til programmernes kildekode, og som kun kan ændres af producenten - som adlyder ordrer fra dem, der har råd til at financiere det, nemlig primært store firmaer og den private sundheds- og sundhedsforsikringsindustri ...
Vi læser bl.a. (EHR = "Electronic Health Record" ca. = EPJ):
Health insurers and medical software companies, not subject to such regulations, have provided free software and hardware directly to providers. New York City recently awarded a $19.8 million contract to a proprietary EHR vendor, which will permit the city's Department of Health and Mental Hygiene to provide free software to physicians and clinics to be used for care of patients ("Big Medical Step, Starting with the City's Poor," New York Times, April 16, 2007). While this may be a good idea from the standpoint of affordability and interoperability if the patients all go to the clinics that use this particular system, it won't be much help when those patients seek care somewhere else. Additionally, it is not clear how much — and for how long — training, technical support and upgrades are to be provided under this grant. But it is a safe bet that additional products and services won't be provided free indefinitely.Med et frit (altså frit i den forstand, vi før har nævnt, at alle har ret til at bruge, undersøge, modificere og distribuere systemet) system som VistA ville alle interesserede parter kunne påvirke programmets udformning og selv tage beslutninger om, hvordan det skulle virke - i stedet for at være prisgivet en bestemt, mere eller mindre velvillig og rimelig leverandør.
However, those measures really only amount to a sop, compared to what is possible with the recent availability of WorldVistA, which is based on the success of the Veterans Information Systems and Technology Architecture (VistA), an EHR system whose development began more than 20 years ago in the Veterans Administration health care system. WorldVistA (www.worldvista.org), in development since 2002, is available to health care providers, and is estimated to cost about one-tenth of what a proprietary system costs for a license fee and a support contract ("Physician, Upgrade Thyself," New York Times, May 30, 2007).
What's more, because of the open-source nature of its license, the code is freely available, and users may make improvements without running afoul of copyright restrictions. Certification by the Commission for Certification of Health Information Technology (www.cchit.org) was announced on May 1. The implications of open-source WorldVistA and other open-source EHR systems (see www.openehr.org) are huge.
The move toward a universal EHR is much more than the introduction of a new technology in medical care. Universal implementation of proprietary EHR systems has the potential to wrest control of the doctor-patient relationship from doctors and their patients. Unfortunately, most doctors and their patients don't have a clue that this could happen — and already is happening — right under their noses. And, they will be paying for it!
Der kan være vigtige ting på spil, f.eks. systemets beskyttelse af patienternes personlige oplysninger:
Let's take a look at one example of how EHR technology can change the way we view the protection of physician-patient communications, a value central to the provision of optimal quality medical care. Before the advent of word processing and large-volume copying technology, the privacy of physician-patient communications and information contained in medical records was protected by, among other things, the fact that much of the information was recorded in poorly legible handwriting, usually stored as a single copy in a file room somewhere. The information could be obtained by unauthorized persons, but usually was not worth the trouble. When such information is stored in electronic form, and there exists the capability to alter and/or transmit what would occupy rooms full of paper records to anywhere in the world in a matter of minutes, the protection of the security and privacy of personal health information (PHI) deserves the highest priority in the design and architecture of EHR systems. This is a power too important to keep out of the hands of consumers (i.e., the public, especially patients) and those to whom they entrust that information (health care providers).Så man kunne altså afværge mange af den slags trusler - og samtidig få installeret verdens formentlig mest omfattende og fuldstændige patientjournalsystem for en tiendedel af prisen for de proprietære løsninger, ved at satse på et frit system som VistA.
While current law (notably, HIPAA) permits access of identifying PHI to health insurers, it is not written in stone that such information needs to be available to the many entities who can currently access it. For instance, all a health insurer needs to know is that the individual to whom services were provided is eligible to receive those services, that the services were actually provided and were medically necessary and appropriate, and that the entities that provided those services were authorized by the insurer to receive payment for those services. If we can develop the technology to pay for medical care in this way, an important step toward protection of personal privacy will have been achieved. On the other hand, if the health insurance industry can control the development and deployment of EHR systems by virtue of their near-exclusive ability to finance proprietary EHR systems, it should not be difficult to understand that such technological methods to protect privacy will never become a reality.
Men hvorfor gør man det så ikke? Formentlig af tre grunde: Vanetænkning, mangel på viden om alternativer - og økonomiske interesser, der trækker i en anden retning.
Link (via GNU/Linux and Open Source Medical Software News, i sig selv en ganske interessant side).
Læs også:
- Patientjournaler og open source - introduktion og diskussion af Open Source contra proprietær udvikling
- Patientjournaler FINDES faktisk som Open Source - om det amerikanske VistA, verdens største og formentlig eneste komplette patientjournalsystem
- Patientjournaler og Open Source - kunne vi have gjort det bedre? - diskussion af VistA og interview med Joseph Dal Molin fra organisationen WorldVistA
- Elektroniske patientjournaler - baggrund og arkitektur - en nærmere præsentation af VistA , dets funktioner og arkitektur