One interesting poster that received some attention at the World Conference on Lung Cancer in Korea several weeks ago was on the subject of a Dutch website called longkanker, which means lung cancer in Dutch.  Like OncTalk, the developers of this website were medical professionals who wanted to provide high quality information to patients.  And with more than 12.5 million searches going on every day for health care information globally, the internet is a good way to convey information to people. 

   Before it crossed my mind, however, the Lung Cancer Information Center in Netherlands was on the scene.  Recognizing the need to get high quality, credible information to the general public, and taking it upon themselves to provide information in Dutch when there was little if nothing out there otherwise, this institution developed strong relationships with a large network of pulmonologists in the Netherlands to develop and publicize this website featuring a range of topics in lung cancer such as what it is, how it’s worked up, and what treatments are available.  They then developed publicity materials that went out to multiple medical organizations and to the network of pulmonologists in particular, who remain very central in lung cancer management, in the Netherlands.  Because it’s the name of their site, the term for lung cancer in Dutch generates their website first in the returns from the search engines.   

   As described in their paper that describes a progress report (abstract here), they started in January of 2003 and instantly had over 4000 unique visitors.   They’ve continued to increase their site traffic rapidly over two years, to approximately 18,000 new visitors per month after two years of operation.  (For comparison, Onctalk, with just me running it and without any network of public awareness, is still in the 5000-6000 new visitors per month range).  They also keep track of the most popular aspects of their site, which is their question and answer forum, averaging 3-4 questions per day, which are answered by a member of their volunteer team of a few doctors, who answer questions within 48 hours (I strive to do it in less than half that time; no big deal, I’m just saying…). 

   One important thing they do is to have readily accessible basic information, and then embedded in deeper levels in the site is more detailed discussion.  The idea is to keep from overwhelming people with more detail than they can process.  As I’ve added to OncTalk, I realize that this is a great idea, and that’s part of why I wanted to start the Core Concepts section — otherwise, you can’t clarify the main themes compared with the constant stream of new information coming through.  And the authors of the report also make the point that one of the most commonly visited sections of the website is the area covering survival figures, a section that they deliberately embed in a deeper part of the site navigation so that people can make a conscious decision to seek it out but don’t need to trip over it on their first visit. 

   The organization running Longkanker also developed a visitor satisfaction survey, to which they received 650 responses to the first inquiry and 382 responses to the second.  Interestingly, the profile of users is similar to what appears on OncTalk as well: far more caregivers/family members than actual patients, although on longkanker it’s very striking, with 57% of users as caregivers vs. only 8% identifying themselves as patients (the remainder being mostly “other” (25%) and nurses (8%).  Overall, 89% of people found the information they were looking for.

   These are baby steps, but the fact that this work received positive attention at the World Conference on Lung Cancer and has now been published in the Journal of Thoracic Oncology, the official journal of the International Association for the Study of Lung Cancer, is notable for making the first inroads of getting the oncology medical professional community to recognize the potential value and significance of conveying highly credible information directly to the public, as a supplement to what an individual oncologist can provide in their visits.  Fortunately, the limited evidence thus far suggests that most physicians consider this as a positive development.

    I know that we’ll provide more information, and specifically will hope to increase the breadth and scale of the information we can offer. We’ll also try to get the word out to more people, because it clearly helps greatly to involve a network of referring doctors or other health care professionals.  This is just the beginning of a lot more offerings to come.  But the rest of the world is starting to notice.  In the meantime, tell a friend.