Standardization process in telemedicine only slowly evolves at the cost of hard effort

Amsterdam 12 April 1999 Dr. Gudrun Zahlmann who is working at the National Research Centre for Environment and Health (GSF) in Germany introduced the second forum session at the recent ITIS-ITAB'99 Conference in Amsterdam. In this discussion, the participants dealt with the pending standardization issues in the different fields of medicine, information technology and networking. In order to launch the debate, Dr. Zahlmann presented a concise survey of the current standards' scene. In the telemedical area, the need has occurred for image standards which allow visual data transmission. In medicine, a range of responsible organizations are taking care of coded medical vocabularies as to deliver specific professional knowledge at those places where it is needed. We are not talking high level medicine here, since the target is formed by the general practitioner. From the technical point of view however, there is more to standards than meets the eye...

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Dr. Gudrun Zahlmann who is working at the National Research Centre for Environment and Health (GSF) in Germany introduced the second forum session at the recent ITIS-ITAB'99 Conference in Amsterdam. In this discussion, the participants dealt with the pending standardization issues in the different fields of medicine, information technology and networking. In order to launch the debate, Dr. Zahlmann presented a concise survey of the current standards' scene. In the telemedical area, the need has occurred for image standards which allow visual data transmission. In medicine, a range of responsible organizations are taking care of coded medical vocabularies as to deliver specific professional knowledge at those places where it is needed. We are not talking high level medicine here, since the target is formed by the general practitioner. From the technical point of view however, there is more to standards than meets the eye...

Dr. Gudrun Zahlmann, GSF - National Research Centre for Environment and Health, Germany
In addition to the mere medical part of the subject, there is also the Wide Area Communication aspect of standardization, which we can refer to as networking. Governments are issuing standards with relation to system environments, whereas national organizations are actively involved in the design of health care standards. In the United States, professional health care provider organizations are playing a crucial role in the standardization procedures. What are your practical experiences in the practical progress of this matter? Which are the most urgent problems to be addressed?
Dr. Luis Kun, Research Professor of Health Informatics and Information Technology CIMIC, Rutgers University, New Jersey, USA
With regard to standards, I would advice to consult the Web site http://www.emr.org which has a sub page that contains a list of standardization bodies in Europe and the United States, showing the progress related to this issue.
Last February, the United States Congress has prohibited to create a patient identifier until the legislation on privacy has been adopted. There is a strong separation between security and privacy, since they are two different issues. The private home or the hospital offer very secure environments to integrate the medical record into a PC, serving as a legal environment. If you want to send the record to a colleague, you go into a fax mode to transmit the file to his computer. This creates a totally different situation for security because the patient record has moved to your colleague's desk. In the United States, such cases are extremely explosive and it will get worse.
Involuntary spread of sensitive information from a medical record can cause people to lose their job or their insurance coverage. I don't know of a similar strategy in Europe but in the United States, we have to be very careful as far as the protection of medical data is concerned.
Dr. Andy Marsh, ITIS-ITAB'99 co-chairman, Greece
Do you have ID cards in the United States?
Dr. Mary Moore, Dean of Library and Information Resources at the State University of Arkansas, USA
No, we had a national health care proposal for medical smart cards but is was turned down for reasons of privacy and security. We introduced it in the military, though. The Web provides easy access which is regarded as a major advantage in Europe but in the United States, we consider this to be a disadvantage to the protection of our privacy.
Dr. Andy Marsh
In the United Kingdom, we haven't got an identification passport which means you can be in the country without any identification. In Greece, the people have an identification document so you can easily organize a system of medical cards or numbers.
Dr. Luis Kun
We do have it in the United States but we don't want to mix them. If you go to any state, your driver's licence becomes the ID document.
Dr. Andy Marsh
Do you think that standards could be driven from the users instead of the standardization bodies? Take, for instance, the Netscape approach that everybody suddenly was using. Maybe, we can have a smart card offered by an airline company to people as a traveller's ID to let passengers travel if the company has their medical data.
Dr. Luis Kun (showing a card)
This is a card that could incorporate a thousand of pages of text. It was tested by British Telecom and in the United States. The price was about $4-6 but the problem is that the physician has to have a device in order to read it. Here, we are talking standards.
Dr. Andy Marsh
We can look at this from a marketing point of view. The user's need is able to force the standardization bodies to develop universal standards. In fact, they are driven by market forces.
Dr. Luis Kun
We do have to account for privacy and security, though.
Dr. Andy Marsh
It depends on the fact whether you are a person with a unique medical condition. In this case, information dissemination stands beyond privacy.
Car manufacturers could equally introduce a telemedical unit in newly built cars. If the driver has an accident, all vital information can immediately be transmitted to a medical centre.
Dr. Gudrun Zahlmann
The Electronic Patient Record carries your full medical history.
Dr. Andy Marsh
And what if the patient were to carry his medical data on a CD-Rom?
Dr. Luis Kun
What if he loses it? Besides, it doesn't matter who carries the medical data, the patient or the physician, but I do not see a reason why to have this CD-Rom since my body is not so much different from anyone else's.
Drs. Ad Emmen, Genias Benelux, The Netherlands
If you carry a card, why should you put medical data on it? If you want to read it, you need to insert it into a reader to consult the pages. Then, you can access information from any source as well, provided that the card gives you the right input. So, you don't need to store the data on the card.
The other thing is that to store the data on the card, it has to be somewhere else, and it will stay there, even when you lose the card. So, why should you then put information on a card, on a CD, or on the Web? The only problem is that you have to have something which identifies you as being you and which gives in some circumstances people the right to access your medical data, wherever they may be.
For instance, if I were to drive a car and had an accident, what I would like to have the card to do is to immediately unlock my ID so that my data can be accessed in order to help me.
Dr. Luis Kun
There are two exceptions to this principle. One is that the card has to contain a minimal amount of critical data, like data on the medication taken, allergies or family history. If you have an accident and you are unconscious, there is no way to tell this urgent information. The second type of data that has to be necessarily stored on the card constitutes the URLs of the doctors who have information about your medical condition, and the hospitals that keep your data stored. Even under the assumption that the doctor who supports you, has to identify himself and has to pass privacy and security keys before receiving the information. At least, he will know where to find the data.
Dr. Andreas Doering, Medical University of Lübeck, Institute of Computer Engineering, Germany
I have two points. The first one is that I am not sure whether it is the right thing to have centres collect so many data about myself. The patient has to take care about his personal health. Otherwise, the physicians only depend and rely on the medical data that is provided.
The second point is that all these technical solutions and different means of data storage are not available in other parts of the world, like for instance, Eastern Europe.
Dr. Andy Marsh
Maybe, the mobile phone would be a solution in those cases.
Dr. Andreas Doering
Yes, but in case of a severe accident, the mobile phone may no longer be intact.
Dr. Luis Kun
Let's assume that we have a case of stroke and that the victim is forty-five years old. The care providers at the hospital perform some lab tests but they don't know who the patient is. They only know that he is in the process of having a heart attack. They look for some kind of identification and ask themselves what to do: perform a bypass or decide for open surgery. Here, the guideline is to perform open surgery because a patient of forty-five still has a long time to live. If the patient would have been sixty-five, they would go for a bypass.
What happens, you see, is that agencies perform studies on individuals and this data is important for population studies, for they discovered that if you perform these analyses every five years, you obtain a clear picture of how to operate in emergency cases and which procedure is best, depending on the patient's age.
Dr. Swamy Laxminarayan, Editor-in-Chief - IEEE Transactions on Information Technology in Biomedicine, USA
We have been working on standards and guidelines. We also have been addressing the issues of interoperability and usability. The industry has come up with standards, such as "HTTP" and TCP/IP, allowing us to perform teleconferences and telemedicine.
We have been talking about electronic medical records since the sixties. One of the first applications which came up in the sixties was the health record. Do we have a list of issues that we know we can solve with the introduction of standards and guidelines? As a community of Information Technology experts, should we be having a set of guidelines?
Dr. Andy Marsh
The only way you can make these guidelines for the problems which occur is by creating a cross-section of different disciplines. We need a cross-border committee.
Dr. Swamy Laxminarayan
There are lots of parameters to create standards for health care tools.
Drs. Ad Emmen
Perhaps, that's the way to go, but if you go that way, you will end up with something like the ISO-standards for networking you can find in very big books in which everything is put together in such a way that is becomes unimplementable. Some things like TCP/IP come up and suddenly, everyone accepts it. I don't mean to say that it isn't useful. This was very useful for the ideas and for the modelling at the time but you hardly can call these usable standards.
Dr. Gudrun Zahlmann
This may be true but there are also other issues. For instance, medical patient records require a minimum of emergency data. Therefore, you need to structure the data.
Dr. Luis Kun
A lot of committees have been working for years and they still have not come to a conclusion yet. Today, there are many different operating systems and we are just taking temporary steps. At present, the technology is moving so fast that a system is outdated within six months. To integrate the various systems is very difficult to accomplish. With the Internet, we are starting to erase this kind of problems.
Dr. Swamy Laxminarayan
I think indeed we have to agree that in the near future, the question of compatibility is bound to disappear.


Leslie Versweyveld

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