Contents

  Freedom of Information Conference 2000

Dr George Lundberg
Medscape, Inc

The pros and cons of unfiltered access on the relationship between patients and health care providers

I believe in freedom of speech. I believe in freedom of the press and I am prepared to say that on the internet anything goes and that is okay. However, I know anybody can be an author, editor, and publisher on the internet and fake the whole thing and that is okay also. But how do we work with that?

Does the internet have value and what value does it have? My metaphor for health information on the internet is an elephant. Around the beast there are all these blind men trying to figure out what it is and trying to understand what is in it. Health information varies, some is like the tusk, some like the trunk, some like the underneath of the tail. It depends where you are trying to figure out where the health information is. That is the metaphor that I work with.

There is a patient and there is a physician and they must go together. Without one there cannot be the other. Surrounding the patient and physician is a whole host of information but this leads us to the question, what do physicians do? Some cut and we call them surgeons, some shoot ray guns at people and we call them radiologists. What physicians do is mostly nothing but give information. They listen, observe, identify, order, do differentials, institute treatments, monitor, seek, gather, assimilate, interpret, dispense, and give feedback. It is almost entirely information.

So in what way does the internet have a role there? In almost every way. I am going to talk about medical journals and how they work, about communication, then something about ethics, and then some warnings.

The role of journals

When I got the job at JAMA someone said, "George congratulations. I want you to remember the primary role of the medical journal is to shed light." I said thank you and promised to do my best to do that. I learned quickly that another primary role of the medical journal was to take heat. Then, believing that pre-empted strikes were important, I learned another major role was to give heat. If you are going to take it you give it first then at least it is bi-directional.

Faraday said work, finish, and publish. You did the work, you did not finish, why did you start? You finished you did not publish, why did you bother? If you don't publish nobody else in the world will ever know you did the work. If you are going to write a paper I suggest you first ask yourself, "So what if you write it, so what if you don't write it?". If you cannot answer the so what question honestly, don't write the paper. Once you have written it you ask yourself, "who cares?" And if you can figure that out honestly, that is where you send the paper, where there is a readership that cares.

All journals should have instructions for authors. Authors should be real authors not ghosts, guests or grafters, although a whole lot of that applies to the internet. The editor sits in the centre of what I call the Lyndon Johnson wheel of medical editing. Those that recall Lyndon realise he would sit in the centre and everything else rotated around him. Every decent medical editor feels exactly the same. There are all these publics and it is the editor's job to play to all these publics. If it's going to survive, and I rather think it will, there has to be value added by the process. I used to think readers were the most important, but on the other hand the authors matter a lot. And how about the funding agencies or the owner? The main public the medical editor works for is patients. They must come first whether or not they read the product.

Communicating cause and effect

I am a pathologist. My best professor of pathology was a Canadian named William Boyd. He wrote a great text book on pathology and gave great speeches. I remember one of his talks from medical school, a very long time ago, on cause and effect. Here is a patient, you do this, and this is what happens. But does "this done to this" make that? I have no idea. We have to beware of the young man with a case. It is called an anecdote and there is no science there. That is the problem with the unfiltered medical internet; there is no science there. Look here what I found! It doesn't mean a thing. In the twentieth century Regatta understood it by saying, "just because frogs come out after rain, does not mean it rained frogs". Cause and effect. There are reasons for epidemiologists, statistics, controlled clinical trials, and blinding - to get something called science out of something called observation.

We ask peer reviewers to review a manuscript with numerous questions but mostly, as Stephen Lock used to say, is it new and is it true? If it is not new you are not going to publish it unless you think your audience needs it. If it is not true you are not going to publish unless you're Nature who, some years ago, deliberately published something that was not true to focus attention on that area. John [Maddox] did that and I thought he was nuts when he did it. I still think he was nuts but it did get a lot of publicity for the publisher. Maybe that was part of it, I don't know. Having said that, I remind you that no editor assures you what they publish is true. They can only assure you they did the best job they could to ascertain whether it was true before publishing. All journals make messes, all internet sites make messes. You clean them up in the letters column or with corrections. Flaw leads to correction, fraud leads to retraction. And that works fine.

The times they are a changing. A great Western philosopher said that, a fellow called Bob Dylan . In 1967 the first electronic scientific journal existed at the Massachusetts Institute of Technology and we are crawling about all this stuff in the year 2000. I started with computers in 1963 and since then have been saying physicians are going to use computers big time. Every decade I have been wrong! Until the nineties when it turned out I was right. We had medical online services in 1985 but the market never supported it and it was over. Basically it was too expensive. In 1990 we got the medical CD-ROM and I said, wow we have got it now. Take all that stuff and put it on one little disc. You can play Frisbee with it, jump up and down on it. It had colour, good charts, graphs, tables, and was interactive. Nothing could be better. Wrong again! It was a transitional technology that has already transitioned out. It is over except in the third world countries that don't have good telephone lines and have not figured out that wireless is the way to go.

August 1st 1995, as AMA's internet site was launched, I called the internet the future in the present. I also called it the most important advance in human communication since the printing press and I still believe that - it might even be an understatement. A medical internet, web and networks, millions of participants, research databases, interactive, personal, widely searchable, a massive information source. Disadvantages, unregulatable. Don't even try! The day you can regulate the internet is the day we have one world government. Not soon. Cannot be done, don't even bother.

Ethics and the five questions

Why did you behave the way you did today? And what does that have to do with the internet? Your genes told you how to behave today. How your mother treated you up to the age of three or four determined how you behaved today and beyond that there is a hierarchy at the top of which is personal morality. If this was wide spread and deep enough it would mean there would be no need for ethics or law. Alas it is not so, hence we have ethics. The existence of a law defines the failure of the other controllers of human behaviour. If the United States congress even has to debate the patient protection act, all the other systems just did not work. Our job at the moment is to prevent stupid laws getting in the way of the medical internet and we are in the process of doing that. I will show you how.

We have created ethics for the medical internet in the last nine months. We have drawn from medical ethics, we have drawn from journalism, and we have drawn from business. The medical internet is journalism, as well as medicine, and at some point it will be business too. The Vancouver group [International Committee of Medical Journal Editors] has been setting up rules since 1978 on how authors, editors, and publishers should behave. Peer view journals started three hundred years ago and the Vancouver group started in 1978. It took three hundred years to codify how medical journals, authors, editors, and publishers ought to behave. I call that Guttenberg time. The medical internet came to exist in 1994-95 and we already have the rules. I call that internet time. You may not like that things are moving so fast but you cannot change it so you might as well get used to it. It is real.

Every time I am interviewed about this I tell people to tell their readers that if you're going to use the internet for your health or your family's health you should be able to tell: who wrote it; if it's not fresh, where did it come from; who owns it; where did the money come from; and when was it put there. If the site doesn't answer, don't go there. You can go anywhere for entertainment and titillation, I don't really care, but if you are going to use the information for health ask those questions.

Medscape had no advertising policy when I went there. We created one, we published it there on September 10th 1999. Others have built upon it. We have now created two codes of ethics for the medical internet-the e-health code of ethics was completed in May 2000, and rolled out on Capital Hill as a substitute for legislation. It deals with truth, quality, informed consent, privacy, professionalism, and accountability. I am currently reviewing for Medscape General Medicine, our primary source, peer reviewed, fully electronic, general medical journal, an article from persons at the Health and Human Services of the United States, they are doing a compare and contrast of the five existing codes of ethics for the medical internet. After proper peer review I will publish that as the definitive statement on this issue in Med Gen Med relatively soon. Our immediate turn around time from receipt of application is 50 days, with no loss of quality.

Warning: Internet impact ahead

The Worldwide Web is likely to change every aspect of how we live, just as electricity did. It's that fundamental. How, I don't know but probably in a whole bunch of ways. In the US there is an audience of 50 million people after only four years - it took radio 38 years to get that popular. We are all interested in education, especially patients and doctors. We all know that half of knowledge is knowing where to find knowledge. The internet is the world's greatest, easiest to use, and least expensive library. But it is only the medium and that is very important. Don't let anybody tell you that just because the technical side of the internet is fantastic what is on there is right. It may be, it may not be, it is just a medium.

There is a backlash now. There is so much junk on the internet. People say they don't believe anything they read on the internet. I say I understand that. I never believe anything I read on paper - there is so much junk on paper! It is just a medium. All of us in this room are in competition with each other and a whole bunch of others. We are in competition for reader time, advertising, subscription revenue, and public visibility, and now with the internet you are really in competition with a whole bunch of others. The number of health sites on the internet is something between twenty thousand and two million.

In 1997 Medscape, always free of charge and only requiring registration, made $400 000 in revenue through advertising sponsorship only. This year as a public company it gets $25 million from advertising and sponsorship. It is a mass of information. We do next day conference summaries, knowing that doctors don't do what the literature tells them but what the leaders they trust tell them. So we've hired the leaders to work as medical reporters, to go to the main medical meetings. Peer review of the papers is being written that night and posted the next day. They don't have to wait a year or two years, they get it right here. But it is written by people, name-recognisable people, who know what they are writing about. There are thirty thousand full text, peer reviewed articles in Medscape Select. What is wrong with Med Line is their four thousand journals, most of which you don't care about and have never heard of. You know there are only five hundred medical journals in the world that are ever cited any significant number of times. Medscape Select has the 269 best medical journals on Medline chosen by seven different methodologies. So when you search Medscape Select you are searching Medline for only the 269 best journals. You don't worry about all the chaff in the other 3700.

There are a lot more consumers than there are doctors so we were bought, in part, by CBS Television and Radio, and CBS Health Watch has been up for patients since November 1999. It got 200 000 page views yesterday. And our recent merger with Medical Logic, an electronic medical record company in Oregon, has allowed us to capture all the health information that matters, generated by the doctor and the patient. Capturing that, informing the decision-making by Medscape, at the point of care, at the doctors computer or the hand held device - we have just bought AnywhereMD.com for hand-held stuff through palms - that is our business plan. I have a vision of a new world made better by information but I know that a delusion shared by many is a culture, shared by some is a cult, and shared by one is madness. Am I alone in this delusion of a new world made better by information?

I know that in the world's population only one percent owns a computer, so what is this crazy man talking about? A world made better by information with those kinds of real numbers? On the other hand our market information out of Shanghai, where we are doing research to start Medscape Asia, tells us that for every PC in Shanghai there are 35 internet users, so maybe that one percent is a little misleading. I would question that Wilson Rouse was right when he said don't ever do anything just because you can. And remember that it all comes down to one word - trust. When it comes to medical information I think it makes a difference whether it has been filtered or is run of the mill garbage.

Questions from the floor

Re-use but recognise

Question 1: I have a question on re-use. All this information is available for me to use on the internet. Can I send it to my physician? Can I send it to my project team? What are the re-distribution issues in this?

Dr George Lundberg: As far as I am concerned for our stuff you can take it and send it anywhere you want, we could not care less. We own the copyright, but go ahead and send it, as long as we get recognition for it. The copyright is basically going to disappear, just like a licence to practice medicine based on state boundaries, the internet will do away with all that.

Patients as well as doctors

Question 2: Do you collaborate with patient's organisations?

Dr George Lundberg: We collaborate all the time. Patient input is sought every day. They respond to questions, their letters are posted, all people and all ages, doctors and patients alike.

One site for all

Question 3: I have been covering medical websites for about four and a half years and it has always struck me as being artificial to separate a clinician site and a consumer site. However, there have been recent decisions not to have a separate consumer sites and I happen to think this is a good idea. What do you think?

Dr George Lundberg: Two past experiences. Medscape was founded to help doctors practice medicine better. Medscape has always been used by more non-physicians and still is. That is first. Second, when we started the HIV site at JAMA we learned it was used mostly by non-physicians because more people in the AIDS community know a lot more about HIV than their doctors. So the way we take those two experiences and use them in Medscape is to allow people to go where they want. They have to register but we don't prohibit them from anywhere. We will guide them to where we think they might be most comfortable and not waste their time. For instance, HIV patients read what their doctors read usually on that disease but if their father breaks his hip, they don't know about fractures so they go back to the basics.