E-Patients, stand up for the patient voice at Transforming HC 2009, 2/26 in Boston

Late update: If you've read about this elsewhere and you just want to vote for the proposal, click here. You'll see the number of votes and a tiny "Vote For" caption. Click it.

---

Prolog: social media is all about user-generated participation, a great thing for empowered patients, but all the Twitter mentions of this event are passive publicity like "Hey there's an event," instead of "Add your voice" as e-patients do! We're empowered and engaged; we create our own dialog; we participate. This post invites you to do so, because the conference organizers have invited us to. Do it!)

---

E-Patients to the fore: time to speak up! This is a Boston event but they're taking input from everywhere. Yes!

On Feb. 26 I’ll be attending an evening event in Boston, Transforming Healthcare 2009. Interesting for two reasons:

• Some serious CEO-level voices:
  
  
• James Roosevelt, CEO of Tufts Health Plan (one of the best in New England) and member of the Obama transition team
  
  
  
• Charlie Baker, CEO of Harvard Pilgrim Health Care, my own insurance company, and a great health policy blogger
  
  
  
  
• John Glaser, CIO of the Partners healthcare system (Mass. General and related hospitals)
  
  
  
  
• And more
  
  
• Excellently, they're taking user-generated, online, user-voted questions. Holy cow, yes, event organizer Steve Wardell is using a real Web 2.0 social media tool (UserVoice) to create the conversation in advance, from the community! You get to speak up. (Guess what I think you should do.)

Yes, we get to create (and "vote up") the questions we'd like asked of these people. There's expected to be serious media coverage, too.

But here's the thing: I have serious concerns about the questions that are already in the list and top-voted. They're computer-oriented, not patient-oriented. Example:

How patients should expect to impacted by the EHR incentives
Patients will need to understand issues around privacy, access, and portabilty of their digital records, as these records become more pervasive as a result of the new incentives. How can we engage patients as supportive partners in making sure the electronic information in their records is accurate, complete, and being appropriately contextualized?

We?? Who's "we"? Not the patients, evidently!

I created a question, just as you can. You can vote for mine (free), comment on it (hint hint), or add one yourself. Here's mine:

What about enabling user communities like ACOR.org?
We're missing a *major* opportunity if we think health IT is limited to giving providers new systems. In my own cancer, sure I read & shared my online medical data in PatientSite, but the most valuable info I got anywhere was from my ACOR cancer patient community. Every condition needs something like this. Microscopic cost, enormous payback!

Attend if you can. (Let's have a meet-up!) But even if you can’t, speak up online:

• Vote for the questions or create ones of your own
  
• If you’re a blogger, blog about it and ask your readers to participate too.
  
• Same if you’re a member of any healthcare community.

See, if we don’t speak up, conference attendees will rightly conclude we don’t have anything we want to say. And they might even conclude there aren’t many empowered patients who have anything that they want heard.

Plus, if you and I haven’t met, we can have a tweet-up and meet-up. Do it.

If money’s your only reason ($79) not to attend, volunteer: “We’re looking for volunteers who can help us get our message out by blogging, taking photos at the event, and helping with logistics. Let the organizers know you’d like to volunteer by emailing us here.”

Wardell has given us an opportunity to be heard. Good for him! Go click, vote, participate.

Physicians as coaches, part 2: "Embrace knowledge symmetry."

Cross-posted from the e-patient blog

I don't get surprised these days as easily as I used to before I got "e." But something popped my eyes open last weekend, and I dug into it. It goes to the heart of where the power is, in the doctor-patient relationship. But not just the power – the responsibility for getting it right. Yikes.

A new book, Patient, Heal Thyself, is reviewed in the 12/26/08 New England Journal of Medicine (review here; subscription required). I’m a bit stunned by author Robert Veatch’s apparent position on “patient autonomy,” but I soon learned that his utopian-sounding views may be closer to reality than I imagined.

Still, it seems a bit much. Reviewer Mark Hall, J.D., of Wake Forest, says:

Veatch’s proposals are so startling that readers of this review may doubt my characterizations, so I will quote liberally, starting with its excellent title — Patient, Heal Thyself. This injunction captures Veatch’s two main points: Patients alone are in charge, and they have no choice but to assume this active role. According to this “manifesto,” doctors “will no longer be seen as capable of determining what will benefit their patients. It is patients themselves who, in the world of the new medicine, have to take charge.”

As someone whose butt was saved by excellent medical care, I find it unimaginable to consider doctors “incapable of determining what will benefit” me. What, like I was going to think up high-dosage Interleukin-2 on my own?

But whether we accept every word in the book (which I haven’t yet read), let’s step back and look at those two main points.

Patients alone are in charge: Working group colleague Charlie Smith MD wrote about the review, too. He reminds me that patients are indeed in charge of what gets done; a major concern doctors discuss all the time is compliance: whether we slacker patients will actually take the recommended medication (I do), heed dietary recommendations (oops), get checkups at recommended intervals (mezza-mezz), etc.

And I realized, it goes beyond that: a friend of my family developed kidney cancer a year after I did, and elected not to get treatment where I did – he stayed with his local hospital (also in the Boston area), and is dead now. Who was in charge? Clearly he was. And that leads to the second assertion:

[Patients] have no choice but to assume this active role. A vital question is whether the patient realizes this – or, more to the point, realizes the implications. Did our friend fully comprehend the implications of his choice? Was he “e”? Was he empowered or hopeless? Talking to him, I was never sure, but it didn’t feel like an active role.

But then I thought back to “Doc Tom” Ferguson’s visionary slides, dating back to 1995, predicting that patient access to medical knowledge would turn healthcare on its head. (Click to enlarge.)

The vast majority of tough thinking and wonk work on blogs like THCB, and at conferences, is about the ugly tangled mess American healthcare has become. I'm not belittling that work – it needs to be un-messed – but while that work continues (and regardless of its progress), the real juice for each patient now, today is in how well we take responsibility for our care, by informing ourselves and making choices.

Charlie nailed it in the close to his post: "What lessons does Mr. Veatch's book leave with us? ...It is a good wake up call for physicians. We need to embrace the 'ePatient Revolution', recognize that the patient MUST be the one who is in control of their own health care, assist them in achieving this, and not be tempted to allow that to interfere with our professional self esteem because, in my view, it in no way threatens it!"

That echos last week's post "Physicians are coaches, patients are players."

Or, as my primary physician Danny Sands put it when he and I spoke at Connected Health in October:

• Embrace knowledge symmetry.

That's the core of it. See our banner graphic – "health professionals can't do it alone." We the patients do need to accept that not only do we have the right to guide our care, doctors need our help – and we need their guidance.

Please donate to ACOR

As my longtime supporters know, two pivotal moments occurred in my care: when I was referred to my oncology team at Beth Israel Deaconess, and when my primary doctor Danny Sands handed me a slip of paper that said on it "ACOR.org."

The time has come when, for the first time ever, ACOR must ask for donations. Go directly to their donation page, or read on.

----

ACOR, the Association of Cancer Online Resources, is the community of cancer patients who gave me absolutely the best information I found anywhere on the Internet. I've mentioned them many times: http://patientdave.blogspot.com/search?q=acor, because what I got from ACOR made a huge difference in my sense that I could beat this thing.

Plus, ACOR communities give vital emotional support. Here's a message that came through today:

My husband is on chemo for stage 4 colon cancer, he is not very happy and a bit difficult to live with! I have been having bad headaches and had a brain scan a few days ago just to check there is nothing sinister, the oncologist feels it is stress but thought it best to check with my history, stage 3 RCC. [renal cell carcinoma, the type I had]

My mother is in hospital in a city many miles away and I have not been able to get there yet. This is hard.

Today I have my 3 children with their partners and 3 grandchildren coming for some festive celebrations. I hope to find the magic of Christmas in all this and I would like to wish this for everyone on the list too.

ACOR is a profound expression of people helping people using the Internet. It was conceived by a man whose wife had a bad cancer experience; he created it free out of its personal funds, it's grown to hundreds of thousands of users and each list is staffed by volunteers from the patient community. It's free to all and it's open 24/7, and believe me, both of those make an enormous difference when you suddenly learn that your butt is on the line.

Plainly put: no other resource anywhere outside my hospital gave me more accurate information, and nothing in the world gave me the confidence that the information I was getting from my hospital was accurate. My ACOR community was the best resource I had. And it's open to all: repeatedly we hear about people who have no health insurance, for whom ACOR is their only reliable resource.

Well friends, the time has come when ACOR needs our support. Please go to their donation page and donate what you can. The menu suggests $50, but of course smaller amounts are available - and larger.

How important is this to me? How important do I believe this is for the new world we're creating of patient-centered and patient-empowered healthcare? I myself am donating $1,000, in a year when money is not abundant. Your $5 or more will help too: as the email below suggests, we're going for breadth of support: many hands make light work.

The form gives you three picklists:

• Main ACOR group: mine is KIDNEY-ONC
• In honor of: "general" is okay, but you can use "in honor of a cancer patient" (moi) or "in gratitude for a doctor" (David McDermott) or "a nurse" (suggestions: Kendra Bradley, MeeYoung Lee, Gretchen Chambers)
• Amount
  

I'm breaking mine into several.

Funds usage: Detailed plans have not yet been laid out but I myself have joined ACOR's "inner circle" funds team, and I assure you the goal is to improve ACOR's equipment and software, making it more reliable and more available to more people. At one point in 2007 the entire system went down. The network was unavailable for days, and some messages were lost forever. As awareness of ACOR spreads and the whole world of patient empowerment spreads, we simply can't go on forever with an all-volunteer staff using cobbled-together equipment and software. Plus, we want to add technologies to reach people who don't even have a PC ... today some of the most disenfranchised citizens around the world use only their phone for Internet access.

Thank you. Below is the email that I myself received about this, from Robin Martinez, one of the volunteers who runs the KIDNEY-ONC group. (She's an oncology nurse who lost her husband to kidney cancer.)

====

For many of us, this mailing list saved our lives or our sanity or both. Besides excellent information, we found comfort and friendship here. Today we can do something in return to make sure that we and others continue to have the same great experience with ACOR.

ACOR runs mostly on love and dedication -- but we do need some money as well. We must pay for hardware, software, web storage space, bandwidth, administration, legal costs, accounting, etc. Right now we are scraping hard to pay these bills.

Your contribution will make a difference. We are a non-profit group with proper credentials, so you can take a tax deduction for any donation to ACOR. We have a very easy way to donate on line via Google Checkout, which gives us 100 percent of what you contribute. You'll receive an immediate receipt by email which is suitable for tax purposes.

Please visit today: www.acor.org/donate/now/

While you're at it, please ask your friends and family to donate too. They probably know how much this list means to you. If every list member gave $5 and got nine or ten other people to give just that much, ACOR would receive over $1,500,000!

If someone must donate by mail, here is the address:
ACOR
173 Duane St. Suite 3B
New York, NY 10013

However -- we strongly encourage giving online. That way there won't be any donations going astray! The procedure is easy and quick, and you get your receipt the minute the donation goes through.