It took me a few days to digest what was troubling me with the New York Times Magazine article. The efficacy of the ACOR groups is based in part on the dual fact that patients and caregivers members of the online communities NEVER behave like they are replacing their treating physicians and NEVER practice medicine. At a maximum they provide to peers valid medical information, often difficult or impossible to find anywhere else.

That is a fundamental element of participatory medicine. All those involved, including the patient, are equal partners in the patient care. And they all must know their roles and the limit of what they can individually achieve. As Larry Weed explained:

The idea of “my doctor”, the all knowing graduate of a credentialed university medical school must be abandoned. In travel, we do not talk about “my pilot”, we talk about the airline system of which the pilot is only one part, and his role is sharply defined and rigorously monitored.

While e-Patients and e-caregivers fill-in many of the gaps in the continuum of care provided by the various health professionals, they do not replace the parts that work optimally and are never antagonistic, unless the care is sub-optimal. They certainly do not intend to practice medicine. Nonetheless, as informed patients, they can easily become highly efficient case-managers for their own illness.


As we enter the post-genomic era and witness the fast growth of pharmacogenomics, pharmacoproteomics and their clinical applications, e-patients find themselves facing the first participatory medicine paradox: expert patients develop great respect and rapport with expert clinicians and researchers.

Contrarily to what the New York Times Magazine article title intimates, e-Patients are looking to increase and strengthen the relationships they build with the best specialists for their disease, instead of developing a counter-culture. The more educated they become about their condition the more they respect and attract the scientists and clinicians who really understand the genomic and proteomic basis of the disease.

It is true that, facing e-patients, mediocre doctors should be mortally afraid of participatory medicine. But in reality, they should never have been given the right or responsibility to diagnose conditions they know nothing about. Larry Weed again here:

The unaided human mind is not a reliable instrument for this processing of information in the solution of patients’ problems. It should not be licensed to try the impossible. Yet, medical education and licensure permit physicians to try exactly that. Even worse, the legal credentials conferred on physicians insulate them from competition by less expensive caregivers who would otherwise choose a better way to practice medicine. Non-physician caregivers equipped with software tools optimized for medical information processing could outperform physicians, and thereby avoid vast error and waste, all at much lower cost.

Real experts, on the other hand, are already thrilled by the new opportunities offered by these new form of partnerships. Patient-driven research, including the building and financing of centralized tissue banks and many other activities have the potential to radically transform our knowledge of rare disease in a way unthinkable before the growth of the internet. It is true that, in contrast to the model of the patientslikeme website, all examples I mentioned have achieved success exclusively as a result of the very strong determination by a single or a few highly dedicated human beings, instead of Web 2.0 technologies to filter out unexpected bits of information. The jury is definitely still out to decide which of the 2 models will achieve what we are all looking for: Optimal care for ourselves and our loved ones.

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