Announcing the Patient Participation Conference

With pleasure I announce the 2010 Patient Participation Conference. This is a project of my employer Cautious Patient

The subject of the conference is simple “How to be an e-patient or e-patient caregiver”. This should be broad enough subject matter to cover any current discussion in the e-patient community. The basic principles of the conference will be:

  • An unconference: content generated as much by attendees as conference organizers
  • Low cost: preferably under $200 for the average attendee, we want real patients and caregivers to be able to attend out-of-pocket. That means we also need to low-glitz; you might get a t-shirt as a handout, but no ipod.
  • Scholarship some anchor and keynote speakers: we would like to find sponsors (and are willing to sponsor ourselves) attendees who would be important speakers, leaders in the e-patient community. We cannot afford to pay everyone, but we want to do what we can.
  • Everything video recorded, and published for free in near real time. This makes the conference for everyone, not just those who can afford to pay to attend
  • Small, short and intimate.

While most of the conference will be unplanned and free-form, generated in real time by people attending the conference, I want to have a few pre-planned anchor talks and keynotes that will serve to ensure that attendees are guaranteed to get at least a few things that are useful to them. With that in mind I would like to find basically two types of talks, either leaders in the community that are also strong speakers/teachers or talks with amazing content, delivered by people who are just OK speakers. I would rather hear a great story than a great speaker. Here are my personal biases as far e-patient speaker selection:

  • The User over the CEO – I would rather hear about a user who used HealthVault to improve his health than the guy who runs HealthVault at Microsoft.
  • Tactics over Strategy – I would rather hear “How to be a great diabetes mom” than “how to improve diabetes compliance in the U.S.”
  • Technology, but in the back seat – I think “How to really use Google Health” and “How to use gmail to manage your health” would be equally relevant. I would -love- a talk entitled “My health notebook kicks your PHR’s a**”
  • Hard stuff over the easy stuff – losing weight and lowering cholesterol is a good goal for almost half the country, but it is not the same thing as living with Diabetes or a failed kidney, and that is not the same thing as cancer or anything with “terminal” in the name. This also applies to controversial issues.
  • Evidence over Anecdote, but both are best – I want to make sure “the science is on our side”. I think talks that emphasize how patients can embrace and understand research are critical. I think a “tale of two e-patients” is a great example of a talk that nails this issue.

What other “biases” should an e-patient conference have in its anchor speaker selection? What specific speakers would you like to hear? If I am going to invite the “CEO” what companies are really enabling the e-patient movement?

Please help me out by contacting me with the answers, but you can also just leave a comment!