Health ethics code and self responsible consumer to chase evil monks from the Web

Brussels 24 November 2000The first keynote speaker at the MedNet 2000 Conference was Mr. Michael Hayes Samuelson, the former director of the U.S. National Center for Health Promotion (NCHP). As a specialist in health behaviour and consumer advocacy, and taking part as member of the e-Health Ethics Steering Group, Mr. Samuelson made a strong plea to fully blend the voice of the health care consumer within the medical dialogue between scientists and practitioners. He called the Internet the wild wild west in terms of medical information for the public but at the same time warned against censorship. Each health care provider should take his responsibility instead, and meet the public's need in its enormous hunger for reliable on-line health information by providing easy access to legitimate Web sites and doctor-patient e-mail communication.

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Medical self responsibility constitutes a key concept in changing the consumer's behaviour towards health. This is difficult because human behaviour typically involves a great deal of emotional factors. Early disease detection however is of capital importance and this is exactly the area of Mr. Samuelson. Today, the doors are wide open to information for patients and it is the duty of health professionals to listen to the patient. This will bring the partnership between physician and patient at an equal level. Physicians might become somewhat frustrated when facing the far more critical patient who dares to ask questions. Given the fact that life is not lived in years but in moments, the quality of life should be guarded however. People take more interest in personal health and this is good since knowledge means power. Yet, the evil monks have not entirely disappeared in the mists of the past.

For centuries, the hierarchical doctor-patient relationship was characterised by passive compliance till well into the 20th century. Even governments are taking care of the population's health in what is called socialised medicine. Mr. Samuelson referred to the Medicaid and Medicare initiatives in the USA and to the National Health Service in the United Kingdom. But the emerging trend to reduce health care costs largely has increased the responsibility of the individual. The World Wide Web offers people a beautiful chance to build a self responsible attitude through the search for medical information. This Internet information however may be false. How are we to separate valuable health information from trash, created by electronic evil monks who want to take advantage of the patient?

Here lies an important role for the Internet Healthcare Coalition (IHC) to deal with ethical codes in the International e-Health Code of Ethics. According to the IHC, health ethics include principles like truthfulness, informed consent, quality, privacy, non-deception, security, best practices and professionalism, responsible partnership, and accountability. IHC's objective is to secure the benefit of the Internet for the people's health. To this aim, the organisation represents all groups of interest in order to take care of ethics in health care information provision. Mr. Samuelson also mentioned other initiatives, such as for instance the Health on the Net Foundation (HON) but he stressed that more international participation is still required. We must be careful though not to create twenty different codes of ethics and therefore "do the right thing" in implementation.

As for the current trends, Mr. Samuelson came up with the following figures:

  • 40,9 million Americans have access to health care information services. There is an intensive search for information and a growing interactivity.
  • 34,6 million Americans want to communicate with doctors by e-mail
  • 33,4 million Americans want access to a doctor's Web site which should be able to present legitimate information.
  • 28,3 million Americans would like to have access to a Web site, set up by a local hospital or a community care centre.
Confronting these statistics with the real situation, it appears that only 3,7 million Americans communicate with their physician via e-mail. Barely 3,2 million American citizens can consult their doctor's Web site and 3,8 million people in the U.S. have access to a hospital Web site. Consequently, there is an enormous discrepancy between what people actually want and what they have. The demand for legitimate medical information remains largely unmet.

In the meanwhile, 15 million on-line Americans are prepared to switch their doctor against a Web site, a fact which counts for a turnover amount of 77 billion dollars. In turn, 12 million U.S. citizens want increased interactivity via e-mail, representing another 62 billion dollars. In addition, the consumer nowadays has become a bit cynical when it comes to commercial interests in health care. Health care providers should also be aware of the fact that the Internet is serving a transgenerational culture, meaning that several different generations are on-line. Health information providers have to pay attention to differences in culture and age. Only then can the Internet be a powerful knowledge tool for medical science and technology. And yet, no matter how lifesaving the both of these may be, a painful personal experience has taught Mr. Samuelson the all-embracing value of human touch and compassion.

For more information on the International e-Health Code of Ethics, we refer to the VMW April 2000 article Internet Healthcare Coalition to await comments on e-Health Ethics draft Code.


Leslie Versweyveld

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