Encompassing the Real and the Virtual

Editor's note: Cancer patients can discover a wealth of information relating to their diseases on the Internet. What is a lot more difficult is to find it in a understandable form. This was the reason that Nicole Oehlrich, a young Heidelberg researcher, and her husband took on the enormous task (entirely in their free time) of setting up an Internet site containing information, in lay person's language, on all aspects of cancer.

Presently, I am writing my doctoral thesis at the German Cancer Research Center in Heidelberg. In my remaining spare time I am, together with my husband Marcus, voluntarily running the largest German-speaking Web site for cancer patients: The Cancer Compass, a virtual community service for cancer patients and their next of kin.

What made us start this project? Actually Marcus and I just wanted to publish a term paper on the Web site of the Technical University of Darmstadt so my colleagues could access it. The piece was on the biology of lung cancer, which I had written during my studies. There was a very personal aspect to the work--Marcus's father and uncle had both died from cancer. This prompted us to undertake some cancer awareness education among our fellow students.

Our term paper aroused a tremendous amount of interest and feedback. Shortly after it came out online, we started to receive daily e-mail correspondence about it. The most surprising thing was that the queries were not coming from the supposed target audience, students, but from cancer patients and their relatives. The patients relayed a whole spectrum of their personal experiences--from having to try to accept a poor prognosis to being bewildered simply because they could not fully understand the diagnosis they were given in the first place. They were often calling out for simple clarification about the basic facts.

We found it difficult to believe that there wasn't any suitable information for cancer patients on the Internet, so we started to do some "Internet investigations." Well, we certainly found many Web sites for cancer patients; in fact, the problem was there was a daunting amount of information out there, but little of it was in a layperson's terms. Furthermore, although some of the sites were helpful, there was no way of getting an overview of the various resources available. We concluded that patients who have little Web-surfing experience would be lost in the vast "Internet information jungle" and need some guidance to find what is out there to help them.

Therefore, we decided to create a portal for cancer patients--that is, to list and comment on the various comprehensible Internet sources, suitable for cancer patients, according to the HON Code of Conduct principles. Our concept was not to "reinvent the wheel"; that is, if something is already done well, it is totally superfluous to repeat it. However, what was greatly lacking was a comprehensive resource connecting and indexing existing useful Web sites. Shortly after, we came up with a name for our project: The Cancer Compass. The metaphor "compass" describes our portal very well: a guide through the vast cancer information on the Internet.

The long-term aim was to narrow and eventually close the huge information gap. The numbers of queries we received grew exponentially, and very rapidly the university Web space that we were using became too limited. Therefore we were forced to decide either to close the Web site altogether or to really start a professional one. We decided on the latter, knowing the amount of work and expense we were letting ourselves in for. You may ask why. We definitely had altruistic reasons, but we also wanted to prove to ourselves that we could to take on this challenge and do it. Additionally, I work as a biologist in cancer research, and in my opinion that means I ultimately work for the patients themselves. Therefore, I wanted to offer them a comprehensible insight into what we do in the lab.

So, we bought the domain krebs kompass.de and rented a server with state-of-the-art technology available. At the same time, we started to teach ourselves programming skills in order to really be able to create the best Web site for cancer patients available.

However, I would really like to stress that the Cancer Compass should not be seen as a replacement for the physician! We created our information resource Web site in such a way that it should support the doctor-patient relationship. By no means should the Cancer Compass disrupt or antagonise that relationship. However, we feel that patients should be informed enough that they are able to understand their disease and that the formerly terrifying, nebulous word "cancer" loses its taboo status! As a consequence, informed patients can start asking straight questions and engage in useful discussions with their doctors, for example, about acceptable therapy strategies. Therefore the patients are empowered, and this in itself helps to increase their quality of life.

In the meantime, we are the largest Internet-based cancer information service in German-speaking countries (Germany, Austria, Switzerland, Luxembourg), with 1 million users visiting our site each year. Because of the enormous scale of the project, we founded a non-profit association, Volker Karl Oehlrich-Gesellschaft e.V. (named after Marcus's father), in January 2000. We still spend all our spare time updating and programming the Web site. It is demanding; very often we answer up to 50 e-mails per day, thereby burning the midnight oil! Of course, at the beginning we underestimated the time investment. But it soon became clear that to do it properly, we had to invest all our free time. Naturally that also meant that I had to be also extremely organised in the lab.

But it has been so rewarding in many ways. We receive an immense amount of positive feedback from patients. One of the other highlights was receiving the best "single initiative" at the first EMBO Award for Communication in the Life Sciences. We would be delighted to hear from anyone who would be able to help us--for example, by writing for the site (from a doctor, patient, or researcher perspective) or by doing some programming. Simply please send me e-mail .

My future career plans ideally would be to continue as a postdoc in tumour immunology and also to continue working on the Cancer Compass. I could not possibly leave the patients suddenly high and dry. I would really recommend such a project to fellow young scientists, although, I have to warn you, only if you are prepared to give it the necessary time and if you have the stamina to keep going! For me it has been the ideal way to complement my work in cancer research outside the lab and truly do something real for patients. I am really grateful to have had this opportunity.

www.krebs-kompass.de --a virtual community service for cancer patients and their next of kin

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