Building a career as a "public patient"

To newcomers: this is my original blog, started in 2007, months before I discovered the word "e-patient." Today my business website is ePatientDave.com. For this series, I decided to return to my roots.
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Two years ago, when I was just starting to build a career in public speaking, I was constantly stymied by the fact that nobody wanted to pay for patients to speak - and, at least as importantly, if a conference organizer did want a patient speaker, they had nowhere to turn.

On this blog, I posted A Call for Patients Speakers Bureau. Excerpt:

We need to create a speakers bureau that lists informed patients who are available to participate in conferences and other speaking engagements. I think this idea was first suggested to me by the wonderful Ted Eytan MD. We need infrastructure (a place to host the list) and funding for the speakers.

Everyone's talking about creating a new world of healthcare that's more patient-centered or patient-oriented. Actually, in its fullest realization, this will be participatory medicine. (See the many posts on the e-patient blog.)

But how can we do that if patients aren't at the table as this new world is thought out?

The situation is getting better, but we still don't have that bureau. Nor do we have a pathway for patients to follow if they'd like to develop a career - or at least a bit of income - out of their commitment to helping improve healthcare. So I'd like to start discussing that here.

Caveat: I have no idea where this will lead. I created my own speaking career with no plan, and sometimes it's been great and sometimes it's driven me crazy. This is not "Patient Speaking For Dummies" - this is "What can we figure out together that will be helpful?"

I've been wanting to do this for some time, but I was finally prompted by separate notes by Twitter friends Erin Breedlove (@ErinRBreedlove) and Ilene Brenner (@IRB123). Ilene wrote:

Dave, I know someone who was injured as a professional dancer, paralyzed, and through arduous physical therapy regained her ability to walk--even dance!

However, during the course of her recovery, she discovered pilates and has worked to help others with chronic pain, as she was helped. I think she is a true inspiration, and with her excellent stage presence and speaking ability, I know she would make a fantastic speaker. I think she could inspire the many people who suffer traumatic injuries, and who live with chronic injuries.

Do you have any advice for her, or others like her, so they can get out there and speak to people?

Answer: no, but let's start. Here's what I did. This is no guarantee of anything. I'm just offering what I have. I was a good public speaker before healthcare, and I was a high tech marketing guy so I know something about understanding your audience, understanding their concerns and what motivates them, and speaking in a way that they (not I, not you) will find valuable. With that as background, here's what I did, rephrased as advice to a patient starting in the same place.

• Figure out what you have to say that will be of value to someone. Having a good story is one thing, having a terrifying sad story is another thing, but do you have anything to say that will change anyone's ability to do their job? Or change their outlook on life? If you don't, you need to ask, what value would you be bringing to a conference? (You might be, but you better think about it.)
  
  
• Figure out what conferences would be interested in that message. Ask around: ask your doctors, your hospital administrators, etc. This can be hard work. Do it.
  
  
• Develop your speaking skills. If you want to be paid to speak, you have to be worth someone getting out their checkbook. Don't let this stop you from trying; you need to gain experience.
  
  
• Create a website or a Facebook "Page" where you can post things. I'm geekier than a lot of people so mine is fancier than most (www.epatientdave.com) but yours doesn't have to be. Facebook is a lot easier. It may be seen as less professional, but it's a place to start.
  
  
• Learn to be competent at PowerPoint or Prezi.com or Apple's Keynote, the most popular presentation software. In later posts I'll discuss this more, if you want.
  
  
• Expect to be paid little or nothing at first, until you've proven your value.
  
  
• When you want to get serious, write a book. It doesn't have to be fancy, it can just be an e-book or a PDF, but you have to be able to say "Author of ...."

That's it for now - I know it's incomplete - more later. Discuss. Ask questions. To get updates, subscribe to this blog (top right).

p.s. We still need that speaker's bureau! It's a lot of administrative minutiae. I'd love it if some right-minded agency would take this on. (Or one of you who's willing to do the work, if you're good at minutiae.)