Beginner's Guide, Part 1

Updated 4/13/08 to make the history more accurate.

I'm starting the process of developing a Beginner's Guide to E-Patient, or you might call it a Patient's Guide to Participatory Medicine. I have a headful of ideas and I don't know where to start. So if there's anything you want to ask, you might as well say so, and I'll write about that.

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Meanwhile, here's the first item:

What's with this "e" thing??

The "e" in e-patient originally stood for electronic, email, that sort of thing, as used by patients. It was conceived (to the best of my knowledge) by Dr. Tom Ferguson, founder of the e-Patient Scholars Working Group. It later came to represent empowerment - patients being empowered to be active partners in their care - and has now evolved to "empowered, enabled, equipped, engaged."

The importance (and viability) of empowered patients, actively engaged and participating in their care, is detailed in the e-patients manifesto.

So what does that mean to you?

If you're new to "e" and you're here as a physician, journalist, or researcher, I ask that you change your perspective on healthcare delivery, so the hospital and doctor aren't at the center - make the patient be your starting point, and look outward from there to see what happens around that hub.

Put yourself in the point of view of a patient (your time will come), and read on.

If you're here as a patient, or to support a patient, or as someone who might be a patient someday, this is your starting point.

When I got my cancer diagnosis last year, I had no idea how much of a role I was about to play in my own care - much less why it was important for me to do so.

When you have time, I urge you to read the manifesto (above). Written by doctors and skilled researchers, it's full of information about

• How the healthcare system is different today from what I imagined
• How patients are changing their outcomes by actively participating (with their doctors) in their own care
• How some doctors, but far from all, are "getting it" and making the transition to empowered patients being active participants in their care, and what you can do if yours isn't
  
• Why in today's world of exploding medical information and treatments, the best medical journals are often no longer the most useful resources - online peer communities are.
  
• How patients are using those online peer communities (such as ACOR) to connect with others who share their disease, their concerns, and their personal research findings
  

In several hours that document will change your approach to participating in health care. You'll become empowered (free to act) and you'll see why you want to be actively engaged in your care.

The next step will be to become equipped and enabled. More on that later.

Part 2 is here.

A new quartet to keep an eye on: "On Air"

At last weekend's local barbershop quartet competition, a new quartet popped a lot of eyes open. Their first song contains, about 45 seconds in, one of the best renderings I've ever heard of a "bangin'" barbershop chord, performed at a level that usually requires an international-top-ten quartet. Three of these four are members of my chorus.


From left to right: Jon Green (tenor), Jayson McCarter (lead), Kurt "Boot!" Boutin (megabass), George "the man" Feinberg on baritone.

What's particularly astounding is that these guys have been singing together for less than two months. Imagine what it takes to be so precise in beginning and ending phrases so completely in synch, not to mention with the pitches matched so well that they produce the "expanded sound" that's the hallmark of barbershop harmony.

What a pleasure to be around at the first coming-out of a new quartet like this.

E-patients: the system is valuable, and so are you

Yesterday my wife sent me a very sad story titled Four Get Cancer from Teen's Donated Organs. This morning I wrote a heartfelt post about it on the e-patients blog. If you're trying to understand what the role of an e-patient is, in today's healthcare world, I urge you to read it.

The post is not about the tragedy itself; it's about one of the pivotal points of learning in becoming an e-patient.

One of the central barriers to "participatory medicine," as we're calling it recently, is that some doctors (and patients) don't yet understand that there's far less risk in patients self-educating on the Internet than was once feared. The e-patient white paper (available on that blog site) documents this in some detail. My post looks at this incident as a painful example of that point.

It's really, really important that you understand that lesson and explain it to others. It's the first step toward becoming a really effective partner in the care you're seeking, whether it's for yourself or a loved one.

Randy Pausch is still kickin'

I last posted about Randy in mid-February. At that time he'd beaten the odds on expected survival. Several weeks later he testified before a Congressional subcommittee.

Please go have a look at his web site, which has a link to his 8 minutes of testimony. He's a really persuasive speaker.

There's also a promo for an ABC News show next Weds, 4/9, about his famous Last Lecture. I personally can't stand Diane Sawyer's overly emotional approach to everything, but I'll be taping and watching the show. (Not surprisingly, the show is timed to coincide with the release of the book about his lecture, one day earlier.)

His daily update journal, also linked from his site, details that his condition is worsening measurably, and in his testimony his voice now trembles when he talks about his family. Yet he remains so committed to being fully alive in every way that he can - that's what I love about him. In that way, he's my brother, in more than just the universal sense.

A Neuroanatomist Witnesses Her Own Stroke

Wow, what a speech, tying together so many aspects of all I've studied (many of us have studied) about what it is to be a human.

Neuroanatomist Jill Bolte Taylor talks about observing her own stroke as it happened.



(If the embedded video gives you trouble, view it on the TED site here.)

Wonderful insights about the functions of the two hemispheres, and what she experienced as parts of her mental function dropped away, leaving her for a time with nothing but the experience of the moment of Now.

Aside from the inspiring beauty of her story, what smacked me in the face was the great similarities between what she says and what I discussed last year with members of my cancer community, about being at peace with it all, as Buddhists have done for millennia and as teachers like Ram Dass (nee Richard Alpert) continue to do today. A lot in common, too, with the description of psychedelic experiences such as described by Aldous Huxley in The Doors of Perception.

Powerful speaker.

I'm listening to her talk for the third time through. I know exactly what she's talking about re "no longer the choreographer of my life," and several other things, so I have no doubt at all that what she ultimately describes is available to every one of us, and that includes you.

Cancer patient empowerment for GenX and GenY

From the e-Patient blog:

Check out this interview [below] with Matthew Zachary, founder of ImTooYoungForThis (cancer resources for GenX and GenY).

(This is from the Health 2.0 conference where Susannah Fox spoke, as I noted the other day.)

It's a perfect example of how Web 2.0 means we get to say: provide a platform (the Web) and "an open mike" ("anyone can publish"), and you may get a bunch of inane garbage, but you'll also get some absolutely wonderful creations that might never have seen the light of day.

The Minnesota "wrong kidney" cancer tragedy

You may have heard of the tragedy earlier this month in Minnesota, in which a kidney cancer patient had the healthy kidney removed, by mistake, leaving him only with the cancerous one.

This hits home for me, since my own kidney was removed a year ago this month. Adding impact, a year before that, I lived just 15 miles from that hospital, so it coulda been me.

Some people are focusing on who's to blame, but from the patient's perspective, the screaming headline on this story is that if the patient and family had had access to their medical records, and had known that they could and should read them, this disaster apparently could have been averted.

See, here's the thing: all my life, I thought about this stuff abstractly - like, analyze analyze, should be could be oughta be. But when my ass was suddenly on the line, like if things don't go PERFECTLY I'll die soon, I quickly lost all interest in whose fault anything might be - my concern was "How can I do everything in my power to improve my odds?"

Being an empowered patient (though I didn't know the term yet), I spoke up everywhere I could, and I read everything I could in my records on my hospital's PatientSite.

As I'm now fond of saying, your time will come. Prepare yourself. Think about this stuff before you're in a crisis.

Please read my posts about it on the e-patients blog - both the original, including an important comment from a past president of the MN Urology Society, and my reply to him in a second post. Included are excerpts from my actual radiology reports, to drive my point home. (I copy & pasted 'em right from PatientSite.)

Recent posts on other blogs

Since my return 3/2 from the e-patient retreat in Texas I've been running around the health blogosphere, trying to get a grip on all the conversations that can make a difference in creating a new world for all of us. (Remember, your time is coming. Listen. Act.)

Dr. Ted Eytan is my new hero in the medical blogosphere: "e-Health. Patient Empowerment. Washington DC." Reading him is efficient - five good topics in today's brief post.

Benefits of electronic prescription ordering on Paul Levy's blog. (See the comments too. I've found that often the comments are as important as the post itself.)

Kevin, M.D. is a highly rated blog by an outspoken pediatrician who, I just figured out, is right here in Nashua N.H. You wanna hear someone saying how it all looks from the inside? Sign up to this one. Lo, look who was in the Wall Street Journal last week, as a result of being on the op-ed page of USA Today. He talks (frequently) about the shortage of primary care as a root cause of our healthcare problems. Good to see him getting some ink.

The primary doctor issue is the focus of PCPCC - The Patient Centered Primary Care collaborative. Here's a Healthcare Information Network post about PCPCC - it's cuckoo that PCPCC.net doesn't also have a blog! (Or if they do, it's not highlighted on their site).

Earlier this month good friend Leslie Harkins met with PCPCC's Dr. Paul Grundy at the Chicago confab of the American College of Healthcare Executives. His slides are hot stuff regarding the worldwide correlation between number of primary docs and overall better health. I'll be posting those slides here shortly. (Hint: more primaries = better health AND lower costs. No surprise that the US ranks in the pits on both scores.)

As Dr. Grundy said in a comment on that WSJ article: "Demand of ourselves and our Healthcare benefit companies: Comprehensive, continuous, patient centered, personal and holistic primary care which is based on strong relationships between patients and their physician — this is foundational to good health."

When the Patient is a Yahoo

I also posted this on the e-patients blog.

There's been a lot of talk about Scott Haig's November article in Time, When the Patient is a Googler: Alan Greene wrote on the e-patients blog; it was a hot topic on the NY Times "Well" blog; and Susannah Fox said:

I'd love to hear what people think about the issues raised, but I also want us to notice the use of the term "googler" to describe the group we would call "e-patients" (and that Harris Interactive would call "cyberchondriacs.")

And this, from Network World: When the patient is a Googler and the doctor is a pompous ass.

There seems to be a binariness to the conversation: some think patients should just mind their own business (i.e. stick to the listening side of the desk), others think patients have every right to mind their own business: be actively involved in researching and knowing their condition, and bringing things to the table.

What's missing is the aspect of building an effective partnership. As a living specimen of the patient side of things, I have a couple of observations.

1. How dare anyone tell me not to try to find out what's going on inside my body? I wouldn't tolerate that from a car mechanic and I won't tolerate it from a doctor. That attitude is obsolete.
   
   
2. At the same time, if I want partnership, I get a responsibility too. At the core are two-way respect and open communication: freedom to express, freedom to bring things up, freedom to be heard - and responsibility to listen and not abuse the privilege.

As I worked with my care team at Boston's Beth Israel Deaconess, they were open to hearing my thoughts and concerns, and at the same time they had the people skills to guide me effectively, e.g. "That's not where we need to focus right now." Having chosen doctors I trust, I was willing to take the coaching. (All this was before I'd ever heard "e-patient" or "participatory medicine.")

When you look at it that way, it becomes clear: the patient in Haig's article would have been a nightmare with or without Google. The real title should have been "When the Patient is a Yahoo."

For my part, I've started work on an "e-patient bill of rights and responsibilities." Patients, I'm curious - what would you expect in a good partnership of any sort: marriage, car repair, banker, medical?

Speak up: this is a living example of Web 2.0 means we get to say. We can define groundrules that work, creating a new world that will benefit us, our children, and generations to come. (I've already started the conversation with a med student I know on Facebook, and she's psyched.)

A closing oddity: Google's summary of the article contains a phrase that I can't find in the article itself: "A well-informed patient can be a good thing, so long as he or she's got the right kind of information." Doing a View Source shows that the phrase only appears in the meta-tag for the article's description:

<metaname="description" content="A well-informed patient can be a good thing, so long as he or she's got the right kind of information">

That sums it up pretty well. I wonder how it ended up in the metatags and not in the article! Did somebody edit it out, just as it was going to "press"?

Susannah Fox's keynote at Health 2.0

Thanks to Amir Lewkowicz of Inspire.com for this video link. He put it in a comment on yesterday's post, but I'm not sure the long link fit, so it's included again below.

Earlier this week, at the Health 2.0 conference in San Diego, Susannah Fox of the Pew Internet and American Life project gave a terrific yet short keynote speech. I wouldn't be surprised if we someday mark this as a cusp, a turning point. It's the best quick answer to "What's all this e-patient stuff?", plus a bonus super-sharp insight into what the future holds.

Spend 10 minutes watching the video clips below and you'll pretty much be up to speed.

• Video extracts of Susannah's talk, plus a post-interview, here.
• Full text, with her annotations, here.
• Article about the event on ReadWriteWeb.

Susannah's a member of the e-Patient Scholars Working Group. So is my primary physician, Dr. Danny Sands. I love these people and what they're up to; they are actively working at making reality of the principles, practices and ideals I acquired during my cancer adventure. (And man are they smart and fun!)