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The Experience of Pro-MED
Martin Hugh-Jones, DVM, PhD DR. HENDERSON: The next presentation will be by Dr. Martin Hugh-Jones, Professor of Epidemiology at the School of Veterinary Medicine at Louisiana State University. He has served as chairman of the WHO Working Group on Anthrax and Director of WHO's Collaborating Center for references and training in remote sensing and geographical information systems for veterinary public health. He's been a moderator for Pro-MED, the voluntary, Internet based, global disease reporting system that has proved so successful and which so many of us rely on.
He was also one of the team that investigated Sverlosk anthrax epidemic. He will speak on the "Global Awareness of Disease Outbreaks: The Experience of Pro-MED." DR. HUGH-JONES: It's a pleasure to be here. I remind you of an event that happened about 120 years ago when they built the Crystal Palace just outside London and Duke of Wellington who was responsible was taking Queen Victoria around, and she noticed all of the sparrows trapped inside the glass, and she said, "How are you going to get rid of them?" And he said, "With sparrow hawks, ma'am." (Laughter.) Pro-MED came about as a result of a seminal publication by Institute of Medicine in 1922 on emerging diseases, and from that followed various discussions in Geneva, and then Jack Woodall, who had been working in Geneva and had been there during the Kuwait troubles and was responsible there for the BW response, took it to himself and gathered his friends around him, and in August the 22nd, 1994, the first notification went out on Sabia (phonetic) and other viruses. It covers human, animal, and plant diseases. It is non-governmental. It is open to any and everybody. You don't need a password. You just need to sign up so the computer knows where you are, and it is moderated.And one of the interesting things that we noticed with some amusement on the inside is the catalyst that it has had on a number of organizations who are now turning out their own rapid response E-mail, electronic newsletters and whatever. I won't name them. They've already advertised themselves already today. We still say we're faster than they are, but that's -- you know. We do deal with emerging diseases, and as far as human beings go, it is realized that most of these are going to come through the animal world, and in 1999, for example, 63 percent of all postings involved animal diseases and zoonotic diseases. So that veterinary armor that is exceptionally important, and I was asked to join -- I can't remember exactly when; about '95 -- Jack and I were at Cambridge together, and he dissected mice on the second floor. I was dissecting horses in the basement, and I took on the veterinary side as a sort of probationer, and I found it very interesting. In the first two years it took that long for the medical fraternity to realize what the contribution was from the animal side. But now it's such that when I go to a meeting and I hear people talking about Pro-MED, the physicians start lecturing me about animal diseases, and I love every minute of it. (Laughter.) It was originally funded by the Federation of American Scientists, and we utilized satellites. That worked fine, but the satellite system that Satellite was using was well over age. There were all sorts of funding problems. The new satellites, there was uncertainty about band width and availability, and fortunately in the midst of a great deal of worry in 1999, we were acquired by the International Society for Infectious Diseases, which comes out of Harvard, and Oracle jumped in with some money and software, and we have the Rockefeller Foundation, the Harvard School of Public Health, and we are negotiating with Mr. Gates for some longer term funding. But it is a real problem to keep it going. And as of last year, we had 20,000 members in 160,000 countries. There's a hit rate on the Web site alone of 10,000 a month. I'm still amazed by the number of people who read it every morning like their newspaper, and it seems to work very well. It's a typical British, amateur effort which has worked, and this was the distribution of the membership as of the end of last year. You'll see the weighting in North America and the Antipodes. Europe was slow getting into electronic communications, but they've caught up. Unfortunately the places that we really need membership, as in central and west Africa, and the -stans are still shy, and we need to get more people from there.
The way it works is that we have a number of systems for scanning newspapers, reports, encouraging people to get it in. There's a collection of sheepdogs out there, as you might say. This comes into the editor who then sorts it out to whichever moderators are on duty at that time or have special interest. They sort it. Maybe they'll ask for more background information, and it may go out for further information.
I will admit when I was a moderator working all the time, I used blackmail frequently. It works wonders. The moderators are here, and I'll just go through this rather slowly because one of the things we've had is risk communication. People do not trust governments mainly because governments prefer to have news about the minister opening a new clinic and not about a disease problem, and opening a new clinic is not news anywhere.
And knowledgeable sources are trusted, and when there's trust, it reflects back in the assumption of knowledge, and through the moderators and through the membership, who is actively involved -- and we really do work hard to identify people in the membership who will be called upon to comment or come up with additional information. It really helps, and I think this has been much to our advantage -- and accountability is important. Every piece of information that goes out has a brand line at the bottom, and you can see who's worked on it, who's edited it, whose hands it's gone through, and if a mistake is made, we know exactly where it happened.
And I cannot emphasize too much the need for transparency by agencies in providing information. This engenders respect in your way. We've had problems of claims of unreliability. We work on the cusp. We are collecting information largely from journalists. We've already had comments about journalists. They frequently put out bad information because they're not provided with good information. If you give them a press release, they're lazy guys. They'll copy it out and get it straight out, but if they're having to be briefed by voice, they'll write down the wrong things, and then there's a lot of catch-up that has to go on. We did an analysis at the end of -- no, beginning of this year on mistakes, and we found that in going back over our records that 1.7 percent of official reports were retracted, and 2.6 percent of newspaper reports from members were incorrect. So the error rate is somewhere around four-plus percent, which considering the speed with which we get material out and the fact that everyone is doing this on top of all their other work, I reckon it's not too bad. I wish it were better, but when I was moderator early on, it took two-thirds of my day just doing all of the housekeeping, and Tam Garland has taken over me. It takes four hours out of her day. Plus she has a job as well. There are few graphics at the moment. This is on purpose so that it can be loaded anywhere. This is an inheritance from Satellite where that was going to clinics in Africa and Asia, and these were modest computer systems, and we couldn't overload them. There are search engines for prior postings, and there's how it works. This is what the Web site looks like. This was early October, which had the number of postings for that day. You just click on it, and this is for Rift, and then the report comes up with all of the prior postings. Something I had to learn was moderation. I'm an experienced epidemiologist. I've worked on a whole range of diseases. When I read a report, I'm far more interested in the mistakes in the report than by the knowledge because I know how the epidemiology works. So from the mistakes, I can see how they are handling or mishandling it. So I had to learn how to comment, and there's also the comment by Pelagius, who said that people won't think unless you add labels, except he did it a bit more rudely than that, and you have to add labels so people can see where the important parts are from the less important parts are, and specialists tend to be very narrow in their knowledge, and outside their area of interest, they'll frequently know absolutely nothing, and you have to walk them through it and have to provide reliability. Do we trust this report? Do we not trust it or is it so-so until we can get something better, which is why I frequently was involved in blackmail? I'd send a copy to the Chief Veterinary Officer saying, "Victoria, say we have this report ready to go out. If I don't hear from your people in 18 hours, it's going out," and I'd do it. And they quickly learned to respond quickly, and the CBO from Australia, I worked closely with a member of his staff, and in six months we got him so quick off the mark it's just been marvelous ever since. (Laughter.) And you have to encourage these government people to be proactive with their news. People learn that if you get it out first, you are then in charge of that news string. Everyone then is listening to you, and you are seen to be the authority. If the journalists get out first, you aren't. So get it out first. And obviously we have fights inside which you don't wish to know about, but we're continually arguing over what should go out and why did you cut this and why, et cetera. It is a matter of development. Another aspect is we get misinformation, which we identified that was funny, and then there was Prairie Dog, and then there was a Hollywood Nutta (phonetic), and then we have disseminated advancing disinformation, and we're quite good at catching them. Now, I want to take you on to something that happened in May of this year, May and June, from Per Lausund, who is a senior veterinarian with the Norwegian military. To say that they're picked up, this addict who had died of anthrax and immediately I knew something was wrong. What you see here is the edited version of what went out. This is a shorter version, a rather pianissimo version. And so whilst I was trying to work out what to say, because thinking about advising on terrorist events as they happen when you're faced with it, it's another matter altogether. So I was informing people in the Surgeon General's office, the FBI, the other alphabet soup, FAO, WHO, and key other people that I knew. I was trying in my own mind to work out what to say so as not to give advice to every wooly headed survivalist who would think it was right to kill a drug addict, and it's religiously correct, is it not, I mean? And so this was my comment on the back. There's a certain amount of red herring in there, but I was told by a good journalist friend of mine who when she read this she understood everything that I was getting at, and a colleague of mine who's responsible for security in the Bronx, he had all of his people warned. Down in Louisiana, we had a prostitute that had died of an overdose, and she was wheeled straight back into autopsy to check. It worked. Those who needed to know could read what I was getting at. We then had confirmation a few days later that it really was anthrax, and just at this same time, I read the BBC. I read a lot of newspapers on the Web. We came up with this report of an addict dying in Glasgow, and I thought they must be related, you know. So one of the advantages of being a moderator with Pro-MED, when you make a call to some public health officer in in this case Glasgow, they pick up the phone and talk to you. My students believe I know everybody in the world. It's not quite true, but a hell of a lot of people know me and return my calls, and in that way we were able to find out and keep in touch with the people in Glasgow as that problem developed. As they checked out anthrax, there was a problem over some misreading of some serology and where the samples actually went to, and in due course it turned out to be a clostridium noviae (phonetic) infection, which I grinned to myself because when I was a veterinary student working in the investigation laboratory in Redding we had the place full of sheep, ewes, dead from this every spring, and as a vet, we see clostridium noviae all the time, every spring certainly, but it had gone into a human hospital, and it took them a little bit longer to discover it. Now, noviae got into that heroine has not been revealed. I don't think anybody knows. A team from CDC was sent over to help out, and they had a number of units set up in the U.K.,a nd in due course virtually all of the cases were brought together, traced back, batch watched, and it came together nicely. And it turned out not to be -- what happened in Oslo we still don't understand. The Norwegians have gone very quiet on that, but everybody paid attention. It came together well. This large problem in the U.K. was worked out. We got everybody up who should have known in this country and in some other places as well, and a lot more information happened that we wouldn't have got otherwise. It worked. Thank God, it wasn't a massive, great terrorist event. I was very glad about that, and this was the total part of the epidemic. In the different parts of the U.K. they faded out. I saw in the BBC the other day that the Estonians had done a crafty bit of work and working with the Scottish police, they set a trap, and they caught a Scottish drug trafficker in picking up heroine in Estonia. So it is probably that is where that part came from. It casts a long shadow. It worked this time. It was enjoyable, and one of the things I must admit is that moderating Pro-MED is fun. It's hard work, but it is enjoyable, and when Tam was taking over my job, I said, "Do you really want to do it? It's going to eat up your day and every day you're going to make mistakes, and once a week, you're going to make a global fool of yourself." (Laughter.) And she, bless her heart has taken over for me, and she does a super job. We do need people. The members make it work because when we get something in, we can then send supplemental messages out to people who have identified themselves as willing to comment and have shown reliability in their commentary, and they'll get it, and then they get back to us. I sometimes get somebody who says, "You've made a fool of it, Martin. Why didn't you get in touch with me?" And I say, "Well, why didn't you put your hand up at the beginning and we'd have added you to our list of volunteers?" So if you think we make a mistake, send us a message, and we'll just add you to our list of volunteers to read stuff early and make sure it's right, or you join us in being accused of getting everything wrong yet again. Thank you very much.
(Applause.)
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