"Give us our data": My talk at the NeHC board meeting 6/2/09

Cross-posted from the e-patient blog.

Last Tuesday, June 2, I was on a consumer panel at a board meeting of the National eHealth Collaborative. This is a heady group to be addressing; as this press release says, nine of these people are on the advisory committees that are working directly with David Blumenthal, Obama's National Coordinator for Health IT, to set policy and standards.

My deepest, sincerest thanks to Steve Findlay of Consumers Union, who invited e-patients.net to be on this panel. What a radical idea: have a consumer on a consumer panel! It's so good to see the skies opening in this way.

The topic was whether "consumer pull" would encourage healthcare providers to adopt electronic medical record systems (EMRs). (Like, if you and I keep asking our doctors and hospitals to let us see our data online, will they be more likely to get off their butts and GET our data online??)

All I can say is, if I have anything to do with it, consumers (that's you) will be clamoring to see their medical records, both to check their accuracy and for the reason I sent my data to Google Health in the first place: to get involved in their care, to be responsible, to participate.

Go thou into the wilderness and clamor for access!

Here are the slides I used, with a few more added to make it a self-running presentation. Some of the text is small, so take it to full screen:

e-Patient Dave's presentation to NeHC board June 2 2009

View more presentations or Upload your own.

The panel was videotaped. (It's not available in embeddable format yet.) My portion starts at 34:09.

Video of consumer panel at NeHC board, June 2, 2009

The other panelists were phenomenal; I learned a ton from their expert observations. Some of it was over my head until I listened a couple of times; they have years of experience in these policy discussions. All I know is, I want us to have access to our own damn data. :–)

By the way, a big thank-you to SlideBoom.com, the free service that converted my slides for posting here, including my animations and slide transitions, which cause fits for most such services. Good tool!

Best intro to "health 2.0" I've seen

At the TEPR+ conference in February, where I spoke with my physician Danny Sands, I had the pleasure of meeting the venerable Dr. David Kibbe. An august fellow. Or so I thought. :)

See, I'd known David through his appearances on THCB (The Health Care Blog, where all the big-dog policy wonks hang out). He writes some seriously erudite (and wordy) stuff there, for instance his Open Letter to the Obama Health Team in December. And the reams of comments that he gets, from far wordier people, has usually meant that jumping into that sandpile over there has been more than I dared attempt.

So little did I know, until I met him, that David is One Of Us. Not only is he whole-heartedly into the bottom-up disruption of today's healthcare, in a wholly participatory empower-patient fashion, he's really good at story-telling and getting the idea across.

To illustrate that, here's a 16 minute "TV pilot" he put together to convey what "Health 2.0" is about. It's entertaining, stringing together interviews with some people I've met and others I haven't. (Oh, and did I mention he schemed up a way to weave it into a supposed motorcycle tour, making the whole thing a business deduction?)

I hope you enjoy it, and, more important, I hope you "get" what Health 2.0 is about: refocusing healthcare on us, out here in the real world, particularly in web-enabled ways, as opposed its previous focus inside the fortress. 16:38.



Please do drop me a comment so I have some idea what you think, y'all! I'm on a mission here - it's more fun if I have some idea whether it's working. :)

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.

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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!)

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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.

A thousand points of pain

E-patients, listen up. We have work to do, work we can do.

First, the challenge. Imagine you're trying to untangle a massive, knotted ball of strings, and every time you tug on one, you hear a scream of pain.

Now imagine that it's an economic knot, and every scream is a billion dollars of pain.

And now imagine there are a thousand strings in the knot ... a thousand points of pain.

That's the reality we face in American healthcare. It's a $2.4 trillion knot, severely dysfunctional in that it costs more and has poorer outcomes than any other developed country. Yet as Tom Daschle's book Critical details excruciatingly, every time we try to improve it by tugging on one part of the problem, powerful parties scream in pain, because they have a lot of money at stake.

(Strictly speaking, it's 2400 points of pain, each a billion dollars. I'll stick with the "thousand points of" meme.)

$2.4 trillion is 40 times bigger than Microsoft and Google put together. Imagine if you had to try to fix something that big. How long would it take?

Another view: it's been said for years that healthcare costs 50% more here per person than in most developed nations. If we could fix that with the wave of a hand, our total spending would drop by one third. And that means we'd instantly cut out $800 billion of business (1/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.

Citizens, that's going to hurt. And a lot of people are going to fight against it - not because they don't want better healthcare, but because they have a lot at stake, and it's tangled.

This is a big issue, but we do need to fix it: lives are at stake. Patients and their families are facing lethal diagnoses every day, and we/they need the system to work better than it does today. And that brings up another way to look at "a thousand points of pain": there are 1,000 cancer diagnoses in the US every six hours.* We need the system to serve us well. (And that's not to mention other life-changing diagnoses: Cushing's Syndrome, diabetes, and so many others. Did you know rare diseases are more common than the most common disease? Rare Disease Day is Feb. 28. Might be a thousand points of pain every hour – in the US alone.)

Personally, I'm starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.

The thousand points of pain will work on their aspect of it, and we need them to: I may be an e-patient, but I wouldn't have dreamed up the high dosage Interleukin-2 treatment that stopped my disease.

So let's get moving – let's show 'em how e-patients can git 'er done! Let's gather our facts, band together, create new tools, and spread the word to each other.

Shall we band together? I'd love to build a killer-fine list of noise-making, world-changing empowered patient blogs! As new Web tools come online, we can help each other build the new world of participatory medicine.

List yours here for the world to see, if you want. We'll keep in touch.

*1,444,920 new cases in 2007

Why I love participating in blogs (and in healthcare)

We hear people talking about "social media" – Facebook, blogs, Twitter and all that – and I often hear folks wonder, "Is this making any difference or is it just another way for idiots to waste time?"

Well, in healthcare it's sure making a difference. For one (big) thing, it brings together people who very likely would never have connected. Like, I mentioned Albert Schweitzer, and I just got a reply from the president of the Albert Schweitzer Foundation.

That's amazing, and so is the context in which it happened: patients being welcome in discussion of changing healthcare. This post shares what happened, and my perspective as an observer of these social media changes.

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12/21/08: Paul Levy writes What if?, inviting other Boston hospitals to share ideas and information to try and eliminate common causes of hospital-acquired infections. In one comment, I wrote:

I sure love the idea of cooperating across hospital lines. And I can't imagine anyone with the spirit of an Albert Schweitzer who'd say no. (And yeah, that's the spirit I want in my medical community.)

1/15/09: Paul writes What does it take?, noting that not a single hospital replied to his invitation, not even to say "Nice idea, but you overlooked x, y and z." He cites that day's big news story that pre- and post-surgical checklists reduce errors. He comments that people from all other walks of life think checklists are an obvious way to be sure you didn't forget something, but many people in healthcare prefer to "go commando" (my term - no checklists), like "we don't need no steenkin checklists" (also my words, not Paul's).

A vigorous discussion has ensued - 38 comments so far - some doctors saying change is hard, another observer says changing culture is hard, a few patients piping up. I wrote an irked comment and posted here and on the e-patient blog, and got some constructive criticism. I commented again, repeating my Schweitzer thought. And here's what I got in response:

To what e-patient Dave said:

Albert Schweitzer taught: "Example is not the main thing in influencing others, it is the ONLY thing." Atul's report on Seattle confirms this once again. It's seeming clear that what Paul is saying on his blog has limited influence on other academic centers, at least in Boston. But if/when we at BIDMC have a demonstrably safer hospital than we do now, and medical, nursing, and other staff who are thus even more proud than of working here than they are now (and thus attract others), and if/when we are then attracting patients who trust us even more than they do now, THEN there would be no one in health care who wouldn't listen (or at least look!).

The different views expressed here are unlikely to be resolved through discussion. Schweitzer said "My LIFE is my argument". What Atul reports from Seattle and Jordan is a pretty powerful argument indeed. ...

Lachlan Forrow, MD
President, The Albert Schweitzer Fellowship
Director, Ethics Programs, BIDMC

My mind got blown as I wrote my reply (the links are worth chasing if change interests you):

Lachlan, thank you so much for your kind, informative and illuminating response.

I'm always humbled and grateful when a doctor takes time to teach me something. Sometimes I speak strongly because of my passion for a new world of healthcare, where patients and professionals collaborate in sharing responsibility and creating solutions. (See October discussion of the forthcoming Society of Participatory Medicine, and the recent discussion Embrace Knowledge Symmetry, as BIDMC's Danny Sands put it).

But I'm keenly aware that in absolute terms I don't know squat compared to the vast elephant-sized picture. So I'm always a little afraid to assert a position, and I'm always grateful when someone teaches me.

It's wonderful that social media and increasing transparency are letting lay voices in on the conversation. In developing the idea of participatory medicine, the e-patient scholars group has largely talked about patients participating in their care. But it's evolved beyond that: on his own blog, Ted Eytan MD led a discussion that defined Health 2.0 as "...participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself."

I participate with all humility, I hope, and I'm grateful for the chance.

And, just to be complete, I popped out of humility mode and ended by returning to the point:

--So, like, what is UP with hospitals (and perhaps their boards?) not "participating" in sharing information and ideas as the post suggests?? My guess is that whatever is stopping us, it's causing as much harm as a disease.

The comments are where bloggage gets really productive, people. Without comments, blogs are one-way. You should comment more, here and everywhere. You do get to speak up now.

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"?