Scene from the ACR 2011 Tweetup. Photo by Lothar M. Kirsch (@Rheumatologe)

The first crocuses are poking up, a sign that the spring medical meeting season is upon up. This week, it was Conference on Retroviruses and Opportunistic Infections, and colleagues are preparing for everything from the American College of Cardiology meeting in a few weeks, to the American Society for Clinical Oncology and American Diabetes Association confabs in June. I haven’t seen the agenda for everything yet, but I’m confident that all of them will come up short in one profound way: patients will be underrepresented.

This isn’t new. Medical conferences in have long been tilted toward experts — those with data or experience. And attendees have long been rank-and-file health care providers who want to stay on the cutting edge of their field. In the old, top-down system, having patients at these confabs was superfluous. But those days are over, driven by three trends that are likely to reshape the health care system:

  1. The empowered e-patient is demanding the same information available to professionals. And if that information is available at medical meetings, that’s where the patients should be.
  2. Increasingly, information is transmitted not only from provider to patient, but patient-to-patient. It’s no longer a safe assumption to believe that information only travels in one direction.
  3. The patient experience is increasingly important in the treatment process. The way quality of life impacts benefit-risk calculations is highly personal, making an open discussion with patients crucial to understanding diagnosis and treatment.

These trends aren’t entirely hidden, and yet patients are still hard to find at meetings. Part of this is cost. Part of this is logistics. And part of this is the challenge that comes with overcoming the inertia of the existing presentation-first mentality. But there are enormous  benefits to be reaped for groups that can overcome these obstacles.

Last fall, I attended the American College of Rheumatology meeting, and I participated in an informal “tweetup” during the sessions. A group of individuals: half patients, half providers, found a quiet place in Chicago’s McCormick center and had a robust dialogue about how patients view medical advances and what new forms of communication might create bridges between professionals and information-hungry patients. Much of what I took in during the conference has already left me, but not the experience of that tweetup.

(For more on patients at medical meetings in general, and ACR in particular, please see Kelly Young’s recent publication in the Journal of Participatory Medicine.)

The goal, then, is to recreate that experience, on larger scales and at more venues. Conference organizers can play a part by engineering patient interaction into the program (though official, promoted patient activities). And all of us need to think through ways of reducing the cost burden that prevents patients for attending these kind of events, such as discounted rates and more aggressive sponsorship programs.

The result would be stronger patient communities, improved communication and — in the end — better medicine.

(Note: This is not an issue that’s exclusive to medical conferences. Patient voices need to be heard more often in as many diverse forums as possible. The annual SXSW Interactive conference kicks off tomorrow, complete with a health track. Yet patients are under-represented there, too. Is this a subtle plug for the patient-heavy panel I’m moderating on Sunday at 9:30 a.m., with Alicia Staley, Allison Blass, Kerri Sparling and Michele Polz? You bet. See you there.)