Beginner's Guide, Part 2

This series teaches what participatory medicine means - a guide to learning to participate actively in your medical care. With the right approach, patients and families are learning that they can be truly valuable contributors to their care, for a host of reasons.

A lot of the series is things I learned in a hurry when I got my Stage IV cancer diagnosis. I pieced these thoughts together in the first few weeks, then adjusted and learned on the fly, with no time to lose. Ironically, a year after my diagnosis (when I was essentially "all better"), I learned that all these principles have a framework I'd never heard of: "e-patient," where e means empowered, engaged, equipped, enabled.

Last month we covered Beginner's Guide, Part 1. If you haven't read that post, please do, because here I'll presume you know what I'm talking about.

Five pillars of participatory medicine

This post covers a new model I've recently thought up -- five pillars of participatory medicine. The model may evolve, but here it is at this moment:

1. Excellent providers (doctors, nurses, etc, and excellent hospitals)
2. A strong peer community (other patients dealing with your condition, and/or their families).
3. A strong support community.
4. Awareness of new realities and data that have overthrown obsolete principles about who knows what, and what info is reliable
   
5. Good, effective research skills
   

You, the e-patient, are at the center of all this - these are the instruments of your care that you orchestrate. Perhaps more than you can imagine, even though you're not an MD, your role in the orchestration is entirely within your scope of control - and responsibility.

Lord knows the insurance companies aren't going to pay anyone else to do it. And nobody else could possibly be more motivated than you.

This post will cover part 1.

1. Excellent providers

You have every right to ask who's the best physician in the world for your case. I'm not saying you should ditch yours - how would I know?? You might have the best in the world for your case. I'm just saying it's not at all rude to ask around.

Here's the thing: whether you're in crisis or not, you'd better get ready, because your time will come. So get comfortable asking sensible questions of your caregivers, even for non-crisis conditions: "Is this going to hurt?" "Is there any alternative?" "How often does this procedure harm people?"

I had two cases earlier in life where providers didn't like me asking questions. If that happens to you, run. In one case I actually got up and left the office, and I'm glad, because it turned he left the country a year later on tax evasion charges. In the other case the doctor got huffy when I asked if there'd be a scar, then did a much bigger procedure than necessary - and never came to see me after surgery.

My oncologist is one of the best in the world for my cancer, immensely knowledgeable and skilled. He accepts emails (which I keep short), and when I thanked him, he wrote "I am happy to field your questions."

Here's a tip: #2 (in the next post) can help you with #1.

December update: the series has not yet been continued. Instead, later I did a series summarizing the white paper, starting here: http://patientdave.blogspot.com/2008/08/e-patients-how-they-can-help-us-heal.html

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.

Happy Birthday to this blog, part 2

Continued from Part 1

3/5: "Succeeding in online health" lunch meeting
and "Succeeding in online health" lunch: take-aways

Returning from Texas, I immediately had the chance to attend a technology lunch meeting on Boston's Rt. 128 high tech corridor. I started engaging in the conversation about a new generation of healthcare systems and companies.

"I'm not being anti-establishment here, I'm being businesslike. Peer-reviewed medical journals may be full of reproducible experimental results, but (a) they may not answer what people want to ask, and (b) as happened in my cancer, the best current peer-reviewed journal articles may not be useful anymore."

3/6: Susannah Fox's keynote at Health 2.0

"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."


3/7: When the Patient is a Yahoo

A response to an unpleasant article in Time called "When the patient is a googler." A vital point as patient and doctor alike wake up to the new world of patients participating in their care.


3/22: Recent posts on other blogs


3/22: The Minnesota "wrong kidney" cancer tragedy

A defining moment, for me. A year after my own nephrectomy, a case that vividly illustrates the value of giving patients access to their medical records online – - if for no other reason than to let them and their families check for errors.

3/23: Cancer patient empowerment for GenX and GenY


3/24: A Neuroanatomist Witnesses Her Own Stroke

Jill Taylor Bolte's phenomenal TED talk.


4/1: Randy Pausch is still kickin'

"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."


4/13: Beginner's Guide, Part 1
5/9: Beginner's Guide, Part 2

Since the start I wanted to help people get oriented. I started this series and never finished it. Instead, this fall I "synposized" the white paper.


5/3: My cousin Chris: doctor-to-be, paralyzed, blogging

He's coming along strongly. Long way still to go.


5/6: A (female) e-patient clone of you know who

The e-patient blog starts its serious of guest e-patients.


5/8: Patient-Centered Primary Care

Thanks to Leslie Harkins, I got connected with PCPCC, which continues to be one of the best forces for pushing information top policymakers for bringing us back to the point where we have a "medical home" and where primary care is valued by the payment system.


5/20: The Launch of Google Health
5/24: More on Google Health: two reasons to be wary

As noted in the previous post, I'm now inclined to think that our interests (as patients pushing for change) may override the concerns I expressed here.


5/25: e-Patient stories: several types

As the guest series continued on the e-patients blog, a slew of different stories and scenarios arose. A fitting conclusion to my first full quarter as someone exploring the e-patient world!


5/26: Memorial Day 2008

6/4: Beth Israel Deaconess on ... Jeopardy??

CaringBridge story

This weekend the Associated Press is publishing a story about CaringBridge and a similar site, CarePages. It relates the experience of several users, including my community and family. For more information, see my CaringBridge journal.

Update 6/8: Scientific American's blog has this:

Blogging--It's Good for You
The therapeutic value of blogging becomes a focus of study

... A study in the February issue of the Oncologist reports that cancer patients who engaged in expressive writing just before treatment felt markedly better, mentally and physically, as compared with patients who did not. ...

Visitors: if you're looking for great resources for self-education on how to be an effective consumer in today's healthcare system, here's a post from my CaringBridge site a few weeks ago:

RESOURCES FOR INTERNET PATIENTS

As regular readers know, during this past year I've become a strong advocate of all the ways patients can improve their outcomes and their experience, becoming active participants in their care, especially by using the Internet.

Here are some resources:

• The E-Patients blog: E-patients are "empowered, engaged, equipped and enabled." This blog covers a wide range of topics about the new world of participatory medicine. If you're a patient or family in need, educate yourself by reading the wonderful "white paper" (manifesto) available on that site.


• A community support site, like CaringBridge. It saves you an enormous amount of time corresponding, and lets your supporters check in anytime instead of keeping up with emails.
   To see how it works, you can get the whole year's transcript (1/30/07 - 1/30/08) as a free download (one big file or single chapters), and read while you're sitting in waiting rooms. :)

On this blog I'm starting a beginner's guide to participatory medicine. It's my effort to share what I learned last year, with the intention that others can take a shortcut. In particular I recommend the chapter about "the five pillars of participatory medicine."

Those sites have many links to other web sites. Do your own exploring - see where it takes you.

And by all means, get out there and PARTICIPATE. In the world of blogging, that means you click the Comments link (or Guestbook, on CaringBridge), and enter questions or comments.

Be an e-patient: Ask what you want to know; say what you think.