International Working Conference, Hotel La Reserve, Bellevue/Geneva, Switzerland
THE USE OF INTERNET AND WORLD-WIDE WEB FOR TELEMATICS IN HEALTHCARE
Friday, September 8, 1995 (Ms. Judith Wagner, CIH-HUG, Geneva, Switzerland)
Chair: Dr. Don E. DETMER, Health Sciences Center, University of Virginia, Charlottesville, USA
Co-Chair: Mr. Jean-Claude PETERSCHMITT, Former Chairman, Digital Equipment Corporation- Europe, Geneva, SWITZERLAND
M.J. BALL, W. GULBINAT, J.-C. HEALY, J. VAN BEMMEL
Dr. Robert CAILLIAU, CERN, Geneva, SWITZERLAND
Professor Hans PETERSON, Bromma, SWEDEN
Professor William STEAD, Vanderbilt University Medical Center, Nashville, USA
Dr. Branco Cesnik - Participant (Monash University, Victoria, Australia)
More and more patients themselves are accessing the very same systems that we access. What do we do about patients having access to medical knowledge and their medical files?
Yes! more patients are accessing medical information. We should remember, though, that some patients may be frightened and not really want full information. All patients have the right to determine what and how much they know. Some may need a consultant, someone to step in between the data and themselves and interpret it for them. However, patients do have the right to see their own personal files if they wish. In the USA, this right is protected by law, but not all patients choose to avail themselves of that right.
Mrs. Mary Lindberg - Participant (Bethesda, Maryland, USA)
Concerning the purpose of utilisation for outside quality assurance evaluation - how does this work when people from other disciplines come in to look at your information?
J. van Bemmel:
The project on post-marketing is completely new for us and for everybody. We have already talked with many lawyers from different parties to make it as safe as possible. Now every project that is proposed to make use of these data is going to a board of trusties (the majority are physicians, also a few researchers). That board has to be completely confident that the data are not misused, because if the providers of the data have the slightest idea that their data are used for a different purpose than was initially arranged with them, then that is the end of the project. Now we get questions, for instance, from researchers who wish to use the data for that and that purpose. Of course, when you have these data and when the data are reliable they are a treasure. We have no real answer, but at least we realize we are on very sensitive ground. Data are highly valuable, they are also very expensive and as you dont get it for free - you shouldnt have to give it away for free. Although we have no definite answer at least we have made protocols and a report about this which has been inspected by lawyers, so we hope that we can give better answers in the future.
Professor Wilhelm van Eimeren - Participant (GSF GmbH, Nr. Munich, GERMANY)
There is collaboration between the WHO and the EU, but certainly we have a problem there and this problem has to be solved. It is clear from the presentations how strong the actual thrust is of the EU but there is almost no possibility for the WHO to act in a similar way for us. There is no future for a European WHO if it stays separate from the EU. There must be an organisational concept (some joint-venture type of concept) for the future.
Technical Web-development at CERN has completely stopped, it has been handed over to INRIA. The master concept for the future is Open Systems which allow interoperability and integration. A number of us tried to make Open Systems interoperable and then a few years later these ideas were hijacked and disappeared. We have had to start all over again and The WWW-consortium will try to prevent this happening again. We might succeed this time because we have gone global and at a speed which is unprecedented.
The whole issue of being user-driven, or technology-driven, is far less relevant than it perhaps could be. The application of this technology to healthcare is extremely important, but it is only an application. We are talking here not about "technology", we are talking about "content" and "use". The independence of the technology and the use will keep things interoperable. All efforts like these for application of the Internet and the Web to healthcare must necessarily be global. We cannot think of just Europe or just the US or whatever. Special tools may cause an effective vertical split at some higher level.
Issues like "security versus freedom of standards on the Internet" have escaped coordination. All these issues were summed up very well in Dr. DeBakeys statement: "Finally we must believe that we have to rethink all human activity in terms of the network society".
M. J. Ball:
It needs to be foremost in our minds that the Internet and the Web are enabling technologies" they are not the solutions. But "next generation" type of technology is already here. Searching mechanisms on the Web empower us to build specialised pages and address specific applications. On the Web publishing becomes dynamic and gives the user choices.
A point none of us has made is that we have not emphasized the whole concept of training, education and retraining. How do we look towards rethinking and reexamining everything that we have taken for granted so far?
Today, within the network, we are making a bad transposition of what we have got used to doing, it is a transposition of the written form, using the old style, the old rhetoric. Without some kind of modification we cannot really use this tool as it should be used!
How would you respond to the issue that you raised about "freedom versus control"?
You probably shouldnt look at that at all. Getting people together who have the same interest in use is very important. In fact we have not enough specific "special interest user groups". For the Web-consortium it would be important to have users like you in there, but only one not three hundred.
Concerning the relationship between WHO and the EU and maybe other inter-governmental agencies, as far as I know the EU did not have any responsibility for health until the Maastricht treaty, probably intentionally. Now it has responsibility for health and I think now is the time to see how WHO and other organisations relate to the EU. WHO is the coordinating agency for health. I invite the various players to use WHO as a platform to exchange and to talk. The concept of a developing country is changing rapidly, I think it would be quite useful to also involve them in these discussions, WHO could play such a role.
Perhaps, you can emphasize the game of the various actors. The role of the EU was basically, and continues to be, that of supporting research and development programs more and more oriented to users. The health sector does not appear as a key issue for the Maastricht treaty. But there is a new element, interservice consultation, adopted for integration of the various intiatives in the field of health. For the future we have to coordinate the various health initiatives inside the EU. Probably this action line will be reenforced.
Concerning WHO, for the moment the EU has very good connections with WHO. For the future we have to envisage the best platform, certainly.
Concerning the foundation, our common agreement concerns technology, at various levels. When we introduce this new technology, it is not just a new tool, it is a tool for reengineering the process. All the actors, all the ways of working, the competence, responsability, the whole process is concerned by the introduction of networks. Technology, services, regulations, standards really are useful. But, we have to put forward the global consequence of reengineering something like, for example, shared care. The reengineering of the process of education, of self-training, of working is enormous work.
Everybody has talked about the new structure we have in healthcare delivery. We are trying to treat the patient at the best possible level. We concentrate on primary care and encourage the patients to see the primary care physician or the district nurse first. From there the patient can be referred to other parts of the healthcare system for consultation or treatment. We call this shared care. This system also means a shared patient record. In our country we have a legislation saying that there is only one patient record, regardless of who is treating the patient. That means that the patient record is not only for physicians, it is also for nurses, for physiotherapists and other medical staff. It also means that we have to know who is responsible for the annotation of the patient record. If we can do that, we need some kind of digital signature, to show who is responsible for that part in the patient record. We need also to be sure that the content is complete and correct, and not distorted on the way. We need to know, if there have been changes in the content. The changes are legal in Sweden, but they have to be visible, they have to be dated and to show who is responsible. These are some of the questions I have. I have not found the answers yet.
One of the central challenges that we have in the USA right now is to create pre-emptive federal legislation that goes across the entire country dealing specifically with this issue.
It is absolutely first and foremost and central on the list of priorities that we face. It sounds like you have confirmed the importance of that.
Concerning the importance of developing tools to let us manage the data, I see the WWW as a standard that has allowed independent development. It shows us how we ought to go about trying to put the computer-based record together. The question was raised "couldnt we take advantage of these other matters and leave the computer-based record aside for the moment?". No! the answer is that medical informatics will not achieve the benefits that are necessary to justify investment without the computer-based record. Not just because of its involvement in direct patient care, but because the computer-based record is the way we link knowledge into care and is also the source of new knowledge about the best practice to use.
A framework that you might consider is as follows:
J. van Bemmel:
I think, the statement "medium is the message" is not true on the Web. I would like to descern the medium and the message. We need the foundation because of the message, the medium is already here. A foundation should work on the exchange of ideas and knowledge with respect to functionality.
I would like to see a consortium with respect to networking in healthcare, where we can exchange different experiences in different countries. The experience I have brought forward here is strongly intertwined with the type of healthcare culture we have in The Netherlands. There are all kinds of specific problems in different countries, but we can exchange common problems. Deal with security but above all with functionality. I would like to have a very open structure for education and research, as open and as global as possible. On the other hand, patient care should be very well protected, although perhaps only on a local or regional level. It is not necessary to send the data of one patient all over the world, but whatever we do it remains a global problem and should be treated as such.
As usual we have a need for more publicity, more understanding of what is really going on, what is really "boiling in the pot"! There are the developments that we have talked about, namely new functionalities and efforts regarding security and data protection. We should closely watch all of these developments. Perhaps there are other developments that are easier to handle, because they are more on a wavelength with our national talents and vocation.
The people who are presently boiling the pots in this exercise dont have a recipe or a plan - it is a roll-out system of potential chaos! The Web is not a solution for all aspects of medical record problems and we should not stop exploring all the possibilities. Look at the present landscape and assess the relevance to the various needs for privacy and for education in health. It is either demo or die! I think at this stage the mandate exists to make it happen! The possibilities are exciting, but I dont think that we should preclude our options now.
There are computer-based techniques for recognizing hand-written signatures. Maybe we should have another look at this in healthcare. It might be also interesting to note that there was a doctor who was successfully prosecuted when it was proved to the satisfaction of the court that he had altered a record to disguise the fact that he had prescribed a drug to a patient who subsequently died from taking that drug. This was proved through the audit trail. I suggest the auditing of systems and that might then offer some protection.
J. van Bemmel:
On the legal issue of changing records, when you design such systems, and that also holds for the interchange and communication of data, you should design them in such a way that they cannot be changed afterwards. We provide in our systems at least the following that when the patient leaves the room, and the doctor finishes the consultation with the patient, he cannot change anything afterwards in the record!
We have to figure out what we want to do and then worry about how to do it. On this particular issue I feel very strongly, that you can get into many problems. It is very important to figure out what is reasonable to do in such a case. For example, with incorrect information coming up over and over again without a way to stamp it out. It seems to me that some flexibility with an audit trail would be a better solution.
It is especially necessary if you start pulling together records from different systems, then you have some sort of uniform idea. There are many issues like this that need deep thought and analysis at some content level.
Why not just have a standard of how we notate the fact that something now has a substitutive entry and why we cannot build that kind of mark-up into a standard representation of the data? We need to add that level of refinement.
G. De Moor:
Concerning security, the real problem is not in encryption, authentication or digital signature. When you use Internet for the exchange of patient related data, you give data away to a public domain and you enter into other security problems, misrooting of messages, interception of messages, destruction of messages and last but not least, availability of data. (cf. Internet access-problems) "Availability" is one of the three parts of security, besides confidentiality and integrity.
When you only give access to healthcare professionals to exchange data over a specific network, this limits the problem. Value added network services for patient data exchange are easier to organize in such a way, from a security perspective.
Where does the security come from on the other networks - is it really just because you trust the carrier?
G. De Moor:
When you only give access to healthcare professionals to exchange data over a specific network, this limits the problem. Value added network services for patient data exchange are easier to organise in such a way, from a security perspective.
Your other system is a trusted carrier. As soon as it leaves that system you dont necessarily have that security anymore. That is the big problem with the Internet, I agree.
In the USA we have tried to get a law to make people realise that if they are dealing with data they first of all realize that they have responsibility and that it is not simply a technical challenge and a technical issue. Another question is how do we move from data to information to intelligence to wisdom? The question comes down to knowledge sources and increasingly to getting some standards. Perhaps this foundation could help urge the medical disciplines across the world to take on this as a task, to look at the knowledge in their field and try to do a bit of ordering against evidence-based systems. Also part of the validation is how all of the disciplines interact and about getting this from thought to action. Obviously, if we really are hoping to make an impact on global health, we need to take note of the issue, of the validity and of the importance of what we are doing with our knowledge.
As Aristotle said about the art of proof: When we need to prove that something is true the most fashionable way is to have a theory. If you are unable to have a theory, why dont you take an example, thats what we call paradigm, and you treat that example as a theory!
If we are able to write a paper correctly up to the end, it means that we had everything that was necessary to accomplish the task. If we are stuck somewhere we will clearly understand where we are stuck and how to handle the problem of missing information. We should promote more illustrative examples in our area of handling networking, patient records, security etc. We could examine critically in a more technical and scientific manner, and we could get information from specialists elsewhere who could have already possibly solved these questions in an acceptable manner.
J. van Bemmel:
Yes! As soon as you write it down, you know what you dont know. I strongly believe in controlled experiments!
Browsing through the Internet with a question in mind we usually get references not answers. You like to look for knowledge rather than for references. It is one of WHOs functions to deal with knowledge in the field of health (expert groups writing reports, condensation of literature), etc.
What about the patient or the citizen as he relates to this enterprise and the foundation? How should that be explicitely dealt with? How do we get to action?
That area is one of the major opportunities for reengineering our thinking because medicine, as opposed to health, has been an underproducer, in a large part because we have not tuned our recommendations to what the patient either wants to do or can do and we have not involved them in the process. The kind of systems we talk about should basically let the patient model what would be satisfactory to them. We have to open it up to the patients (without forcing them).
Concerning demonstrations, how do we make sure that this is global and how do we operationalize this?
With regard to demonstrations, in the correct formulation of the question lies the key to the answer. First come to grips with three or four very precise well worked out questions that we want to ask (including the planning aspect) and then we will be able to take the first step to the answer which would be a demonstration.
Concerning the economical aspect of data banks and the Web, especially with regard to copyrights, a green paper has been produced (end of July 1995) by the EU and will probably be the platform for new initiatives concerning copyrights.
We are clearly talking about a technology that we all share and that acts as a glue to bring us here altogether. On the other hand we should also not loose track - what we are really talking about is a means to higher ideals. What is the potential of this to improve the human condition? How we reflect that may be part of the future world wisdom.
J. van Bemmel:
In our field at present there is, indeed, a shared need for a great deal of wisdom!
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