Don't I just LOVE totally screwed-up data. (But check how they dealt with it.)

I often say that I like "Good quality data, well managed." And I talk about the importance of having good reliable processes to ensure reliable data. And I talk about how most industries got this sorted out decades ago.

Well, sometimes things go a little haywire. Here's the email I got last night from Verizon Wireless.

Hm, it seems that when I went to Canada for the Medicine 2.0 conference last week, and adjusted my Blackberry data plan to include Canada, something Did Not Go So Well.

Me being me, I'd done quite a bit of research into my options before the trip. (I have this thing about people knowing what their options are, and being actively engaged to find out.) At the time, the Verizon agent I spoke with said that my data charge would be 0.02 cents per KB. I said "So that means 50k would be one cent, and 1 MB would be 20c." She said "Right."

Well, not so much. Their fraud prevention department called while I was in Canada, because my data bill was going through the roof. "No," they said, "that was 0.02 dollars per KB."

Evidently the original agent didn't know "$0.02 per kb" is point zero two dollars which is two cents. And when I did the math for her, concluding "1MB = 20 cents," she said yes; it was evidently over her head.

So when fraud called I popped my cork. But they said "No problem, we're setting it to the other plan, retroactively." So the bill would be just fine.

Well, apparently everyone got the word except the billing computer, which just sent me a bill for two grand.

When I got the email I called customer service and they hopped right on it. They said it'll take a few days to sort it out but they said the conversations are all recorded in the system and they'll work it out. I asked the agent to send me an email confirming that we'd talked. He said he would. He didn't. I called today and repeated the request. This time she sent one.

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What can we learn from this? It's not just that companies make mistakes; there are important differences in what happens when there is a mistake. Although errors occurred in Verizon's work (twice), they had checks and balances and processes for correction:

1. The fraud department detected abnormal values and jumped into action. In fact they called me while I was in Canada to say that the amount was crazy-looking.
2. They didn't make me wrong about it. Too often a company will say it's the customer's responsibility. Those companies don't win my loyaty.
   
3. The people who called were empowered (authorized) to fix the problem. There was no "there's nothing I can do," no "I'll have to speak to a supervisor."
   
4. Our conversations were noted in the system so subsequent workers knew what happened.
5. They sent me the bill amount by email, so I quickly spotted the problem. (I confess that I don't immediately open every bill that arrives, especially if it's one that rarely changes.)
6. They had customer service people available 24/7. This enables following up on a problem when my schedule allows it.

This is a great model for healthcare providers who are considering improving their processes for detecting and correcting errors in data.

At the same time, note the steps I took as an empowered / engaged / activated consumer:

1. I researched my options. We as patients can and should do the same. Don't expect your physicians to think everything out for you; get engaged, be responsible.
   
2. When I did spot the problem, I called immediately. The sooner you react, the better.
   
3. I didn't blame the person I got on the phone. He had nothing to do with the error. (But I did expect him to fix it.)
4. I described what happened, and ended with "So: what do we do to get this straightened out?" I find that this question puts the power in their lap, where it belongs, and hints that they look up how to solve it (if they don't know). And, the "we" says I know I might need to do something too.
5. Followed up. When the email didn't arrive overnight, I called back and firmly said what I want.

The takeaway for empowered patients and people improving healthcare:

• "Good quality data, well managed" doesn't automatically happen; keep an eye out.
  
• It can get screwed up several ways, both human and systemic. That's why we need sanity checks and processes to resolve problems.
• Learn from other industries. There's no reason on earth why healthcare providers can't use the same processes as Verizon Wireless. (It's not like they'd have to invent them - the processes exist.)
  
• Expect competence in your data providers.
• Be responsible: do your own sanity checks. You may not want to micro-check each detail, but never ever presume that anyone is perfect - especially not in healthcare, where errors are common and systematic sanity checks are too rare.
• Expect corrections. The healthcare industry is immature in this area: from what I hear, it's common for patients to find that a hospital or physician doesn't want to correct errors in your record. Demand it.

Healthcare protest video: "We're #37"

About time somebody did this:



I usually give people the benefit of the doubt on differing opinions, but lately I increasingly wonder what the people who oppose change are thinking.

My route for Sunday's ride

Well, how cool is this? I just found out about this nifty map of my route:



What I didn't know about is that the ride, which I'd heard about as "a bit hillier" than "flat", starts with a 70' climb in the first two miles. Here's what that looks on on the "View Elevation" link in the map above: (click to enlarge)


At first I thought "Hm, I don't know what that'll be like." But I live on top of a pretty big hill, and I've never known how tall, but the other day I did ride up it, non-stop. So I just went over to Google Earth and checked - it's 35 meters (114 feet) in less than 1/2 mile. So I guess 70' in 2 miles won't be a problem. :&ndash)

COOL! (If you haven't yet, you can donate here. Thanks!

(btw, yeah, I used low gear for most of that hill...)

Help create my talk at Medicine 2.0 in Toronto: "Gimme my damn data"

Yes, that's the title of my talk to open the Medicine 2.0 Congress in Toronto next week. Yes, it's the published, advertised title. I believe patients should have complete access to their health data.

Whose data is it, anyway? I said that in May (in my post on "meaningful use"), I was one of the first to endorse the Declaration of Health Data Rights in June, and it was the crux of an ad hoc talk I gave in Washington in June.

But we certainly aren't there yet. Please help me create my talk. What would you want to discuss in Q&A?

Last night I tweeted:

I intend to make a forceful case for it, and I'm not aiming to preach to the converted.

So the question will be, what could I say that could make any difference - move the unmoved?

I have no interest in polarization; my schtick is to move people's point of view.

A side note -

This will be my first-ever keynote to open a conference. Many thanks to Gunther Eysenbach for inviting me. Gunther is the man who, years ago, did the original study that failed to find any cases of "death by googling," an evidence-based finding that opened the door to patient engagement. Today he is publisher of the Journal of Medical Internet Research.

So, here's my question: What could be my "call to action" as the conference starts? (The full conference program is here.)

See, my secret for mid-conference talks is to "listen to the room" and see what needs to be said. But when you're the first guy out of the box you can't do that. :)

For HR professionals: Prepare for increased affirmative action audits

This is a non-medical moment here. I'm demonstrating to my friend David Kourtz, an extremely savvy HR guy, how to grab a thought out of his copious thought-o-sphere and turn it into a tweetable blog post.

We're sitting at Panera and he said:

"The OFCCP has had a significant increase in the number of investigators hired this fiscal year. That will result in many more companies' affirmative action plan being audited as the new active investigators come online."

I have to say, this is not the kind of thing that would have drawn MY attention. But that's the power of a good social network - online as well as off.

David knows this stuff inside out. Contact him at dave.kourtz (at) hr-roi (dot) com.

Launching my new business and its web site

Some of you know that I'm now working part time at TimeTrade Appointment Systems. I'm taking the plunge, starting my much-anticipated business as a consultant and analyst in the new world that people are calling "health 2.0," "e-health," patient empowerment, patient engagement - all of that.

It's terrifying and a thrill. I've been working with some generous friends and advisors to work out the message I want to convey to the people who we think should contract with me. Some delicious opportunities are already in the works, but no chickens are counted until they hatch.

The new website is at www.ePatientDave.com. Send clients!

For the first time in my life - I'm a bike riding fundraiser!

See updates at end and in comments.

We've all heard of personal transformations after a health crisis, but this one's a little abnormal: I have become a bike rider! For the first time in my life! (Well, since high school.) Donate now, or read on:

In June, with no "should" attached, I told my wife "I want to start riding a bike." I got myself a yard sale bike and started riding it, and I liked it.

• I bought some pimpy gadgets for the bike. Nothing major, but yeah, I pimped my yard sale bike. I liked it more.
  
• I found a really nice big park in my town, a riverside park I'd never known was there. I rode through it end to end until it wasn't big enough.
• I had a concern about discomfort in my arm so I checked with my orthopedist. (It had hosted a metastasis during my illness.) A-OK.
  
• I rode the park's trail extensions to downtown Nashua till that wasn't enough.
• I learned there's a 12 mile "rail trail" from Nashua to Ayer, MA, and I loved it.
• 12 days ago I rode it all the way, back most of the way twice - 30 miles total. First time in my life I've ridden 30 miles.

So I went home and opened the email where... my orthopedist Dr. Anderson had invited me to join HER in a fundraiser bike ride for the hospital's cancer research - and I registered!

So now it's your turn: you get to donate! To my very first cancer fundraiser!

Click here. And thanks!

Update 9/5: This is good for the soul, too: here's a photo I snapped today on my training ride, from an overlook above Fresh Pond in Cambridge:

• You guys are awesome – you've already made me the #10 fundraiser in the whole event. This is SUCH an excellent way to thank my hospital. And extra thanks to friend Harry Zane, who's joined the team and will ride too!
  
  
• Today I rode the Minuteman Bikeway rail trail from Bedford MA all the way to Alewife Station on the Boston "T" subway line, then continued to Fresh Pond - a 25 mile round trip. This is so unlike me - except now it's not! Thanks for your support.
  

Update evening 9/7:

• Today I did another 22 mile ride on the Nashua River Rail Trail. I "PR'd," as athletes say - beat my own Personal Record, doing the distance in 1:54, vs the 2:12 it took me to do that distance a couple of weeks ago.
  
  
• Your donations have raised me to #7 in the event's list of top fundraisers. Thank you!
  

Updates continue in the comments.

BIDMC's Dr. David McDermott on MDX-1106 (experimental treatment)

This is the next in a series of podcasts on treatments for kidney cancer, interviews with members of my care team at Boston's Beth Israel Deaconess Medical Center.

• May 2009: Dr. Andrew Wagner, my amazing surgeon, spoke on surgical options
  
  
• July 2009: Dr. David McDermott, head of the biologic therapy program, spoke on medical treatment options.

Today's podcast arose from a discussion on my ACOR kidney cancer patient community. As I've said many times, in today's e-enabled world, it's no longer rare for patient communities to learn about (and start talking about) new treatments long before your everyday physician hears about them. This is such a case: a patient at my hospital spoke up about this new treatment on the ACOR kidney cancer list, and questions arose. Our physician, Dr. McDermott, was kind enough to take time to record this interview.

For patients who are looking for these treatments, here are links to the relevant pages on my hospital's web site:

• The renal tumor program (integrated surgical and medical team)
  
  
• The biologic therapy program (high dosage Interleukin-2, cytokines, angiogenesis treatments, and more)

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Here's a link to all my podcast posts.