In the framework of the World Conference on Medicine and the Internet at the German Cancer Research Centre (DKFZ) Heidelberg from 19 to 21 September an experiment is scheduled to take place. On Saturday 18 September patients, Internet experts and doctors will be getting together for the first time to discuss "How Patients Can Use the Internet". The event has been set up by the Department of Clinical Social Medicine of the University of Heidelberg (chief organiser: Dr. Gunther Eysenbach) in conjunction with the Cancer Information Service (KID) of the Cancer Research Centre and the Information Network for Cancer Patients and their Relatives (INKAnet). Financial support has been supplied by Glaxo-Wellcome.
Used properly, the Internet can provide consumers and patients with a unique opportunity of gaining comprehensive information about the illnesses they have. Here "ordinary" citizens have (in principle, at least) access to the same sources of knowledge as doctors.
More and more patients are in fact going in search of information on the Internet and this is something that has not gone unnoticed by the Cancer Information Service (KID) of the German Cancer Research Centre. "We get an increasing number of inquiries starting with 'I read on the Internet that x is a possible remedy for y'," reports Hilke Stamatiadis-Smidt, director of KID. "That means that in addition to our other services we now have to act as a guide through the electronic information jungle."
Another thing the Internet is good for is linking up patients to form self-help groups, thus strengthening patient awareness, solidarity and confidence. Anja Forbringer, the founder of INKAnet, was herself confronted with a cancer diagnosis. Only after "linking up" with other people in the same position as herself did she regain her courage and optimism. "I was so touched by the responses I got I just burst into tears. So much hope, so many affirmative reactions! And I was not alone! I was determined that other patients should benefit in the same way." That was the basis for her decision to set up an information network for cancer patients as soon as she herself had recovered.
On the other hand, the quality of the information available on the Internet is variable, to say the least. "The medium also contains a great deal of unreliable or downright trashy information," emphasizes Dr. Gunther Eysenbach, Heidelberg University cybermedicine expert and organiser of the Mednet Conference. Dr. Eysenbach has published a number of scientific articles on the subject. "Many doctors are not in a position to give very reliable advice in this sector because they are frequently less au fait with medium than the patients themselves. Some of them also suspect that the Internet may undermine their authority and react defensively when patients start using Internet terminology during the consultation. This kind of conflict can frequently lead to a substantial loss of confidence in the doctor-patient relationship." So patients and doctors must first learn to make appropriate use of the new medium.
The age of "cybermedicine" thus holds out entirely new prospects for a patient-oriented form of medical treatment while at the same time posing new problems. At all events it has profound and extensive repercussions on the doctor-patient relationship, the quality of care and the health system itself. How should patients approach their doctors when they think they have found something on the Internet that might have a bearing on their own case? How should doctors respond to "cyberhypochondriacs" or "over-informed" patients? How do they actually respond in face-to-face situations with patients? What can both sides do to preserve a trustful doctor-patient relationship? How can the concerns and preferences of patients and consumers be integrated into research and practical medcal care ("evidence-based medicine")? Where can patients find reliable information on the Internet and learn to separate the wheat from the chaff? These are the questions up for discussion at the Saturday meeting, centering in this case on the subject of cancer information.
The event takes place at the Communication Centre of the Cancer Research Centre on Saturday, 18 September 1999. After introductory lectures and a panel discussion (free of charge and open to all interested parties) there will be a number of tutorials on how to search the Internet for medical information (participants must register in advance). More information can be obtained at http://yi.com/mednet99/patient.hm or by calling the University Department of Clinical Social Medicine, tel: 06221/568752; fax: 565584.
Please address any inquiries to:
Dr. Gunther Eysenbach
University of Heidelberg
Tel: ++49-(0)6221/568897 or ++49-(0)172/8249086
Dr. Michael Schwarz
Press Officer, University of Heidelberg
Tel: +49 (0) 6221/542310 , Fax: 542317