Presentation
# 4
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6th Internet World Congress for Biomedical Sciences |
Lois Wingerson(1)
(1)HMS Beagle (www.hmsbeagle.com). The BioMedNet Magazine - New York. United States
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Contact address: |
Lois Wingerson HMS Beagle (www.hmsbeagle.com) The BioMedNet Magazine 650 Avenue of the Americas New York NY 10010 United States lois@hmsbeagle.com |
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It is a pleasure to be asked to contribute to such an important discussion. Recently I had to revisit my favorite hobby-horse – genetic testing – on the Web, when I was asked to chair a press symposium on the topic in New York City. Because I am author of two popular books on the subject (Mapping Our Genes, Penguin 1990, and Unnatural Selection, Bantam 1998), I have followed closely the blossoming of genetic information on the Web. It was astounding to see how much it has increased even in the last 18 months.
The pressures on the medical profession will continue to intensify, especially in the United States. The influence of genome research will escalate. Inevitably, patients will turn more and more to the Web for information about health.
This is probably a good thing, in the long run. No doctor can know as much about a patient as the patient knows, but no patient can know enough about medicine. Both patients and doctors need the information, but it is information of different kinds presented in different ways. It is imperative to provide responsible health-care information on the Web, and to help people know how to locate it and how to distinguish the wheat from the very dangerous chaff. It is also imperative that health professionals be able to evaluate the validity of information a particular patient has derived from the Internet.
I edit an online-only magazine about biomedical research, which is located on BioMedNet and intended primarily for biomedical researchers. It seems most appropriate for me to address only the first two questions, about which I have a great deal of experience.
How to evaluate and certify web sites with health contents: BioMedNet’s original content deals largely with biomedical research at the molecular level. Our audience ends at molecular medicine, short of the clinical. Therefore we do not print medical "advice". However, we do analyze other Websites and need to be careful about what we choose to recommend.
The first hallmark of a reliable website about health is that it is easy to learn who is behind the information. Intelihealth, for instance, relies on medical experts from Johns Hopkins Medical Center. Any site affiliated with a medical center is probably reliable, as is a site affiliated with a major government. The problem is where the user can go via links, but a reliable site will also monitor its links using the same criteria.
We are always impressed with a site that volunteers it follows the HON code of honor. An award from Yahoo or one of the other services that gives awards in exchange for a logo isn’t really worth much; almost none of these award-granting sites monitor the veracity of the information. They are more interested in the graphics and the usability, by and large.
It is also imperative to check how recently and how often a site has been updated.
For anyone creating a health-related Website, these messages operate in reverse (obviously): Let the reader know who you are and where you get your information, update it often and let the reader know when you have updated it, follow best practices already set by the industry, and try to monitor your links as continuously as possible. In this instance, links may not only be dead but they may turn bad – not in the electronic sense, but in terms of the validity of the information.
How to structure websites and make them more useful to the non-expert user:
This is a question on which whole books are written. The shelves at Barnes and Noble groan under them. However, there are a few simple principles to start with:
As to how to make medical information useful to the non-expert reader, whole disciplines of medical writing exist to impart wisdom on that topic. The American Medical Writers Association http://www.amwa.org and the National Association of Science Writers http://www.nasw.org both have websites that can provide guidance about that topic.
The first and most important principle is to use a professional science writer or educator to communicate with the public. Most scientists and doctors have been trained in a discipline of writing and public speaking that is inscrutable and forbidding to the public. Their visceral instincts (nursed by a generation’s span of reading medical journals) impel them to use jargon, to provide a great deal of detail, and to address readers in an authoritarian tone. Unless you are a very special biomedical professional, it is wise at least to consult a professional editor before putting your text up on the Web.
I have also been asked to comment about the future of Internet use by health professionals. As to the biomedical research audience, our own statistics imply that it must increase, because so many of our users are post-docs and even undergraduates (and so few are very senior). This is intuitively obvious, when you think about it: The young are prime users of the Internet.
It will be fascinating to watch the continuing revolution in health care that will be spurred by the availability of ever more information about biomedicine on the World Wide Web. We can all hope that its quality continues to increase concurrently.
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