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Participatory Medicine

participatory medicine

Participatory medicine is the emerging paradigm of health care. Dr. Zerhouni, Director of the National Institutes of Health, stated in an interview that the relationship between patient and doctor is changing rapidly. Previously, the patient assumed a passive role, receiving direction from an all-knowing doctor. The doctor is now expected to provide more explanation and communication with the patient and the patient is expected to become more literate and take a more active role in his or her own health.

Internet Use Resulted in the Emergence of the e-patient

The availability of the Internet allowed patients to access medical information that was previously unavailable. The medical establishment previously took the view that the lay person was generally unable to understand complex medical problems, so medical libraries and other sources of information were "off-limits." The Internet leveled the playing field, and the results were astounding. When individuals faced medical problems (their own or that of friends or relatives) and found the medical establishment inadequate to supply answers, they found an immense resource of information on the Internet.

Dr. Tom Ferguson was a prime mover in e-patient empowerment, and established the e-patient Scholars Working Group. His ideas were incorporated in a White Paper called "e-patients-how they can help us heal health care." According to Dr. Ferguson, the term e-patients describe individuals who are equipped, enabled, empowered, and engaged in their health care decisions.

Online Research: How Patients Find Answers not Available in Doctors' Offices

The Internet provides networks of support groups of people who have similar interests in particular medical conditions. The interaction among members results in an understanding of the disease that can be difficult for a person researching alone. A survey of members of online support communities found that online groups ranked higher than physicians for:
  • convenience
  • cost-effectiveness
  • emotional support/compassion/empathy
  • help with issues of death and dying
  • medical referrals
  • practical coping tips
  • In-depth information

The Internet is a particularly valuable resource to learn about state-of-the-art treatments at top treatment centers as well as to learn about treatment options. People with limited access to professional care may find that the Internet is the only resource to become informed about a medical condition.

Can the Medical Community Learn from Patient Research?

The explosion of medical knowledge can make it difficult for even specialists to keep up in their field. This is particularly true if the disease is rarely encountered. Physicians are so busy that they can really benefit from the input from their patient "junior partners."

The e-patients White Paper related the story of Norman Scherzer. His wife contracted a rare form of cancer that was initially misdiagnosed. Through online research he found a specialist that made the correct diagnosis as well as a clinical trial on an experimental drug. His wife was eventually cured. Scherzer established an online group with an impressive array of lay people and specialists who keep up-to-date with the disease. This model can be used for other diseases as well.

The sexual effects of Viagra were originally discovered by patients when they reported on the dramatic side effects of the drug originally designed for angina patients.

A New Journal to Study Participatory Medicine

The Journal of Participatory Medicine was established to create a forum where healthcare professionals, caregivers, and patients all could have a voice to contribute and these voices would be heard. As a result of this participation, a common language could be developed that would describe ideas that resonate among everyone. This communication could result in fresh perspectives brought to the table resulting in clearer understandings and new directions to take in delivering health care. The journal is committed to discover the best practices of participatory medicine and to test their effectiveness in improving health care and reducing costs.

How Can Participatory Medicine be Advanced?

Education is essential to teach people to take care of their own health, to research treatment methods, and to evaluate a doctor's performance. People need to be persuaded to take part in their own health by studies, narratives and reflections.

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