Patients are not just misled by the media, themselves and their friends. First and foremost, they are often misled by the professionals that were supposed to know the answers. If there is one conclusion that I took from working on the e-Patients white paper it is that doctors have a much more limited understanding of the disease process than the system has made us all believe. The greatest role of the Internet has been to surface that very inconvenient truth. Once we were made aware of this limitation, instead of trying to change that reality (impossible!) those of us who got involved early just designed systems to circumvent that problem. It has worked wonders. Without mentions of social media or any buzzword.

In his second post Kent writes:

Physicians need to adjust to tremendous change in the practice of medicine due to the Internet, the wide-spread adoption of electronic medical records, e-Patients, the emergence of patient social media sites, the increase of patient-directed research, the movement to allow nurses and physician assistants to practice to the top of their licenses, the increased federal funding for comparative effectiveness research, the demand for more accountability, and even the use of avatars and video games for health and wellness.

Note that there is no mention of the explosion of research and published data. And note that there is no mention of the inconvenient fact, described by Richard Smith in 2004, while he was still Editor-in-Chief of the BMJ: “Doctors are not Scientists“.

These 2 additional elements, associated with everything else that Dave has been writing during and after he participated in the Salzburg meeting explain why patients suffering from serious diseases should assume at best a “trust but verify” attitude, whenever they are given advice by a physician they don’t know well. And any hint of a mistake in diagnosis or lack of awareness of existing approved and experimental treatments on the part of a provider should be dealt head-on, as is normal in a relationship between equals. The Internet, properly used, does provide, regardless of the opinion of nay-sayers, the tools that make possible this verification process.

Let me repeat what I said earlier. The system and most doctors vastly underestimate the central role of the patient/caregiver as filter of information. Just like Dave said “Won’t it be ironic if *we* end up being the stewards of quality control in healthcare? After all the guff we’ve been given by those lesser docs who say “Look, who’s got the medical degree here?” This is what ACOR members have been doing, together with millions of members of thousands of other online communities for almost a generation!

Real engagement of networked patients is not new and didn’t wait for Facebook or Twitter to exist. Quietly, under the radar, very significant percentages of finite populations dealing with orphan diseases have been taking the reins of optimal care in their own hands.