ProMED Clinical Link Essential

This article by Dorothy Preslar appeared as "Commentary" in U.S. Medicine (October 1995). The two questions on the role played by ProMED in fostering the global exchange of information were posed by Editor Nancy Tomich.

What is the importance of the ProMED network and the Internet in giving the medical community global reach?

Both ProMED and the Internet are POTENTIALLY of great importance. Much depends on both the quality and the timeliness of scientific and medical communications they make available to the medical community AND the medical community's flexibility in accommodating and utilizing such communication resources AND the availability of, or access to, the necessary treatment.

It is my thought that the global importance of electronic communications will ultimately be judged on the last prerequisite. However timely or knowledgeable the communications, however broad the medical community's acceptance and utilization of electronic communications, if the curative drug or antidote or piece of equipment is not available, for whatever reasons, there might as well have been no communication at all.

Given the range of medical capabilities that exist at this time, and given the growing worldwide reluctance to use more than a smidgeon of national coffers for foreign health aid and the entrenched practice of many governments to assign public health a low priority, it would appear that the prospect of a medical version of what some have termed "electronic elitism" is virtually assured. While Tokyo will lock hands with Vancouver, Vancouver with New Orleans, New Orleans with Cape Town, Cape Town with Paris, Paris with Sidney, and so on, medicine's global reach greatly advanced by electronic communications, places like Kikwit or Arapouche may remain largely untouched without a concerted effort to correct the inadequacies. This is another component of ProMED -- beefing up both communications and laboratory capabilities in remote areas.

Has ProMED and the Internet made a difference in the approach taken towards potential outbreaks?

So far, I think ProMED's network, along with other Internet sites and newsgroups, have made a difference in how public health or medical science approach potential outbreaks to the extent that these groups are now in accord that a structured approach is needed. During the Ebola outbreak in Zaire, for example, electronic communications did not change how the WHO team, the CDC labs, the Pasteur contingent, the Red Cross or any number of relief agencies or disease "sleuths" operated. But they did go a long way in demonstrating the global reach of electronic communications and the painful lack of such in countries such as Zaire. Also, these networks did a very creditable job in keeping the general public and colleagues informed.

Their potentiality is a more exciting story. Just as Cable News Network revolutionized not only the broadcast news industry but also the conduct of civil and foreign policy by many nations, the monitoring and reporting on disease outbreaks by a global system, of which ProMED is an experimental prototype, could at least modify, if not change, how health agencies, wherever located, handle potential and actual outbreaks of disease. Exposure is the obvious key. How full that exposure should be is a question currently debated.

One side of the debate holds that information on disease outbreaks should be made public only by national governmental agencies. To achieve national control over the flow of information, reports of actual or possible disease outbreaks would be strictly and confidentially channeled.

The Internet and a network like ProMED would be irrelevant. In this scripting, information would flow in rigid lines from local to state to national agencies, the level of security imposed determined by the situation. Governments could choose to acknowledge the outbreak or to deny it for awhile, or forever. The last, of course, would be possible only if the outbreak were limited and in a very remote area.

The opposite side of the debate holds that information on disease outbreaks should be handled in the same way as it is for any other natural disaster. In any event, this side would argue, it is usually impossible to keep outbreaks of disease from the press. In this scripting, once the news was "out", a system such as ProMED would report it globally, allowing it to seek its own level of importance, as in disaster reporting. If a quake registers low on the Richter scale and none or few are injured or damage is negligible, slight notice is taken outside the immediate area. However, if it registers over 7 points and many are killed or a city is reduced to rubble, people all over the world are not only interested, they want to help.

There is, I think, another scripting that could answer concerns voiced by both sides. The reporting mechanism of a global surveillance program could constructed to function in a "safe mode." With specially designed software, early, non-published, pre-unconfirmed reports of an outbreak could be addressed to a secure mailbox, rather than to a listserver. The professionals assigned to go into this mailbox would access it with a passcode known only to them. When first reported, the location of the outbreak could be described by hemispheric situation, climate (temperate, sub-tropical, tropical) and population density (overcrowded urban, refugee camps, etc.) Only when the media had reported the confirmation by the governmental agency in charge would the surveillance system report the particulars.

It is true that a surveillance system might on occasion never report particulars. In recent years there have been several outbreaks never officially acknowledged by governments of countries whose economic livelihood is dominated by tourism and exports. However, the chance that the particulars would not be known to an appropriate sector of scientists is remote. Likewise, the possibility that an extensive outbreak of a highly fatal disease would fail to be officially confirmed at some point is extremely small. In any event, the goal of any reporting system set up is to trigger rapid and effective response, so that the disease can be contained quickly and investigated while the "trail is still hot". If it cannot be contained by in-country resources, it is almost certain that a government will issue a call for help from outside, or at the least accept an outside offer of help.

What a sentinel reporting system, such as ProMED proposes, could do in future outbreaks is to generate the most propitious moment for issuing that call or making an offer of assistance. (It is, at this point, fantasy to assume that all countries will any time soon develop sufficient containment resources for diseases like Ebola.) And if the issues attendant to establishing such a system -- discretion in handling information, protecting against breaches of confidentiality, being accountable for what is reported, and preventing unauthorized use of data collected --- are satisfactorily resolved, the embryonic ProMED network of the present will grow to full stature in the global medical community.

Goodness, this is much longer winded than I anticipated. Please feel free to call and talk about anything I've said or didn't say. My direct number is 202-675-1011.

Sincerely,
Dorothy Preslar
Washington ProMED Officer