One of the most successful speakers from the USA at this year's ITIS-ITAB Conference, was Dr. Luis Kun. For 14 years, Dr. Kun worked with IBM. After this, he was appointed Director of Medical Systems Technology and Strategic Planning at Cedars-Sinai Medical Center in Los Angeles. In the last three years, he operated as Senior Information Technology Advisor at the Agency for Health Care Policy and Research (AHPCR) in Rockville, Maryland. In this capacity, the speaker represented AHPCR in two committees, the first one being the High Performance Computing and Communications (HPCC) Group, while the second one was the Joint Working Group on Telemedicine (JWGT). At JWGT, he acted as chairman of the subcommission on Security, Privacy and Confidentiality, and also as co-author of the Telemedicine Report to the Congress. Dr. Kun shared his vast experience in matters like genetics, homecare, telehealth, counter-bioterrorism, and security and privacy of data with the attentive ITIS-ITAB audience.
In his presentations at former conferences, Dr. Luis Kun offered a different type of focus on the health care situation in the United States. The major topics were the extended life expectancy and the expenses caused by chronic disease, which gave rise to an increase of the health care budget for elderly people to no less than $680 billion. Two thirds of this money is spent on services and physicians' fees, and not on the diseases themselves. On the other hand, homecare in rural areas will become the breaking point in terms of cost effectiveness for telemedicine, whereas genetics will shift the focus of future health care delivery from diagnostics and curing to prevention. As we are moving towards an information era through a series of transformations, some jobs will be eliminated. In turn, new ones might be created in distance education and telemedicine applications, for experts in communication and computer systems.
The two aspects covered by Dr. Kun in his ITIS-ITAB'99 talk, are privacy and public health. In an editorial, entitled "Privacy is history" taken from USA Today on March 12th 1999, it reads that an average of 92% of Web sites is collecting personal information from their users without telling the Internet surfers what they plan to do with this data. The industry needs a guideline to properly balance anonymity with accountability. On the one hand, there is the rightly claim for privacy but on the other, availability of sensitive data might be crucial in critical conditions. Combined with the issues raised in this article, Dr. Kun shows some figures to prove telephone, TV, and PC are well installed devices in most of the American households by now. Today, the educated health care consumer can find all sorts of medical information from decision specialists while simply remaining at home.
In the November 1998 Journal of Health Data Management, an item on "Gathering clinical data" appeared in which one can read that "a clinical data repository provides the foundation for computer based patient records". One of the popular Pan-American health care organizations has compared technology growth in different continents from the years 85 to 95, and 95 to 2000. In areas like Latin America, the growth is tremendous although the building of an appropriate infrastructure for health information has been a problem. Today, it seems we are heading towards a single phone system to enter all kinds of services. Issues, such as both the accessibility and the protection of information on the Internet superhighway, need to be addressed. Uneducated people are severely handicapped. In the HPCC Group, there is a subcommission on human centred systems. Their facilities for natural language processing can mean a big help for people who cannot write, whereas machine translation might be very useful for foreign language speaking communities.
The quality of the information constitutes another important aspect, as it is becoming increasingly difficult to be an expert on everything and to judge a seemingly good article by the value of its medical content. The concept of the highway hides items, like vocabulary, standards, and patient identifiers. In February 1999, the US Congress announced that national health identifiers remained out of the question as long as there is no privacy law to protect the patient. Dr. Kun depicts a model in which genetic information is introduced into the medical history of patients to indicate their susceptibility to certain diseases. If this data can be marked anonymously to correspond with data on a disease table, and introduced on the highway as to attract information without exposing the patient's identity, studies from prestigious universities related to this data could be piloted towards the original information source. Instead of this source seeking information, the data would automatically be attracted to it. This is exactly what happens in intelligent computer systems.
In relation to this, Dr. Kun addresses the conflict between the public needs for information versus the personal ones as well as the urge for information integration. The strategies used by pharmaceutical companies to sell drugs by means of targeted direct mailing are based on the acquisition of relevant information from available databases. Positive use of this access to personal data involves the delivery of detailed instructive advice from academic bodies to people at risk on how to improve their health. The reverse to the medal is that this sensitive data might inspire insurance companies or employers to refuse risky individuals. The University of South Wales currently is running a project in which elderly people are monitored by means of sensors. If the sensors register a sudden change in the pattern of their daily lives, the nurse or physician is alarmed immediately to check out the situation by phone call. The fact of being constantly watched however can have a large impact on the quality of the individual's existence.
Information and communication technologies allow marketing people to get a detailed picture of every single aspect of our habits as to perfectly learn what to sell to us. Technology is applied as a surveillance and marketing tool, as Dr. Kun points out. In terms of public health diseases, the long term vision is to create an electronic information system that automatically gathers data from a myriad of sources on a real time basis, in order to monitor the health of communities and to perform continuing analysis, as to set a public health care policy. To date, in the United States, databases in counties, states, and at the federal level are not interconnected but they will have to be integrated to take care of the population as a whole, to counter acts of bioterrorism, or to locate single vaccination centres. A single source of knowledge has to be able to use multicast to perform teleconsultations with fifty hospitals at the same time in situations of crisis.
The data sources probably come from many sources and the trend is to use secure Internet. For reasons of privacy, the person's identity has to be kept separate from the sensitive data. On the other hand, the information might save the lives of the population. The use of global positioning or information systems (GPS/GIS) can be very efficient to track down contaminated persons or the source of a virus, which has been travelling by airplane. In conclusion, Dr. Kun states that many of the technologies, already used in telemedicine and distance education, are applicable for the integration of data. However, serious consideration still is needed on the crucial issue of the individual's privacy protection. For more information on the bluebooks and committees of the HPCC Group, please check in at the home page of the National Coordination Office for Computing, Information and Communications.