Julie Sherman (julieswn) Sat 11 Sep 10 18:12
<scribbled by julieswn Sun 12 Sep 10 18:07>
Jon Lebkowsky (jonl) Sun 12 Sep 10 10:42
You do definitely need an advocate, if you can't advocate for yourself, when you're in the hospital. Here's one story: My mother was in the hospital dying from a complex set of problems, including a staph infection that invaded her lungs during surgery that was supposed to improve circulation in her leg (but was an invitation to gangrene, which was another issue). She'd been intubated and depended on us to speak for her. I noticed one day that she was agitated. Eventually I touched her bed and realized it was freezing cold - she was on a thermal bed set as cold as it would go. I asked a nurse if that was for a reason, and he said omygod no, let me fix that right away. Hospitals are complex and people are just people. There's some literature (Joseph Tainter) on the relationship of increased complexity to problem-solving, and the diminishing return on investments in complexity. I think healthcare is less manageable and less effective as it grows more complex. Yet it does solve big problems - if that wasn't the case, we wouldn't be having this conversation. Dave, the book includes your thoughts about how statistics can be misleading... "the media isn't the message." Could you elaborate on that point? How should patients assess statistics supposedly relevant to their health and treatement?
e-Patient Dave (epatientdave) Sun 12 Sep 10 11:47
First, Jon - your mother's ice-bed story is potent, because it shows how legitimate it is to keep an eye on things, and shows that a (technically) simple mistake can happen easily and be hard to detect. For whatever reason, systems in our hospitals simply are not set up to prevent serious mistakes like that. Obviously the temperature display was not big and prominent. And from what I learned researching my testimony on patient safety this year, virtually *all* health IT systems have similar gaps. Human vigilance is required. It's important to understand this as the US starts implementing health IT. Many hospital workers have no experience (yet) at how to keep an eye on things. I'd like it if you would submit that as a short post for e-patients.net. Understanding this is an important part of being engaged in one's care.
e-Patient Dave (epatientdave) Sun 12 Sep 10 13:42
Continuing with #77 - The mediaN isn't the message... the median in a set of numbers. I don't want to get into a whole tutorial on statistics here but it's so important in assessing our options that I gave it a whole chapter *and* an appendix for the overflow material. I believe people have a right to explore and evaluate different options, if they want to. You'll end up assessing the probably outcomes and risks - but that's REALLY tricky if you don't REALLY know what the studies said ... and *how relevant they are to you.* See around 23 minutes of this talk http://epatientdave.com/2010/08/10/when-a-patient-speaks-to-patients-the-conve rsation-goes-farther./: studies get published when the median is known, and they thus don't tell us what happens with the 50% of subjects who are beyond the median. It's complicated by the fact that (surprisingly) a lot of doctors aren't very good at understanding statistical evidence, which makes it hard for them to give us solid advice. A short example is slides 66-67 in this presentation http://www.slideboom.com/presentations/168764/What-e-Patients-Want-%28e-Patien t-Dave-at-ICSI%2FIHI%2C-May-2010%29. A longer discussion is in this post http://e-patients.net/archives/2008/11/making-sense-of-health-statistics.html.
paralyzed by a question like that (debunix) Sun 12 Sep 10 18:16
My medical school epidemiology class was the first and only statistics most of my classmates had, and they were mostly uninterested in actually learning the whys and wherefores and just wanted to pass the damn test. It was quite depressing, because they're absolutely at the mercy of the sales pitches from the drug reps and the people coming around to flog their newest data of whatever kind.
. (wickett) Sun 12 Sep 10 20:37
I'm beginning to think that statistics should begun to be taught in sixth grade, so essential it has become.
Jon Lebkowsky (jonl) Sun 12 Sep 10 21:24
This statistics discussion gets to the question of data literacy, but there's also the question of data access. One of your most-discussed posts at e-patients.net is the one called "Gimme My Damn Data," where you make the case for a patient's access to her healthcare data, the potential for innovation around accessible data, and Doc Searls' concept of "patient as platform." You quote Doc as saying the closed and proprietary nature of heath care is itself a disease that needs to be cured. I believe the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems. The post is at http://e-patients.net/archives/2010/05/%E2%80%9Cgimme-my-damn-data%E2%80%9D-th e-stage-is-being-set-to-enable-patient-driven-disruptive-innovation.html What's happened since you wrote that post? Are you seeing evidence that data will be more accessible?
e-Patient Dave (epatientdave) Tue 14 Sep 10 07:19
Hi y'all - jeekers, I went to sleep sorta - in yesterday's blitz I didn't notice these posts. Boarding for Montreal - more later! Speaking of statistics, yesterday's big time chunk was my semi-annual CT scan follow-up. My remaining lesions are now small enough that the radiologist is no longer reporting two dimensions, just one ... it appears that my composite score is down 75% from March, i.e. just about nothing left. Woot. THAT's a statistic I can get behind. ttyl -
Gail (gail) Tue 14 Sep 10 09:48
. (wickett) Tue 14 Sep 10 09:54
Jon Lebkowsky (jonl) Tue 14 Sep 10 10:02
That's great to hear, Dave! I also want to point to Susannah Fox's great post on mobile computing at e-Patients.net, called "The Power of Mobile." It's at http://e-patients.net/archives/2010/09/the-power-of-mobile.html We should talk about that post, especially this: "I am ready to declare the access revolution over, at least in the United States. Its time to change our frame of reference. Instead of talking about a revolution, our data shows that it is time to start building a new civilization." The official end of this conversation is tomorrow, though as always, we can extend the conversation as long as we want. Anyone reading this who's not a member of the WELL but wants to get a word in edgewise, send your comments and questions via email to inkwell at well.com, and we'll get it posted.
e-Patient Dave (epatientdave) Wed 15 Sep 10 11:05
Re that mobile post (which is excellent, as SFox usually is) - be sure to see the comments. There's significant discussion of whether the "done deal" revolution (which I agree with) is actually reaching the disadvantaged. Hey y'all, it's been good to be here. I'll check back tonight for any last-hour post-flinging.:)
e-Patient Dave (epatientdave) Wed 15 Sep 10 12:02
Re #82, what's happened since my April 2009 post about my health data http://e-patients.net/archives/2010/05/%E2%80%9Cgimme-my-damn-data%E2%80%9D-th e-stage-is-being-set-to-enable-patient-driven-disruptive-innovation.html ... it's described in the epilog to the book, titled "A blogger, 'just a patient,' bends national policy." Little did I realize that this post would land smack in the middle of a discussion in DC about the adoption of electronic medical record systems (EMRs). By that time the federal stimulus bill had been passed, with ~$20B of incentives to docs to use EMR and another $20B of related spending, e.g. training on how to change their business office to operate electronically. Most physicians have only automated billing, because that's how they get paid, especially the insurance billing codes. So when they thought about going electronic for patient records, there was this problem of all the paper records: how to get THEM into the systems?? And the talk in DC was, "We'll just grab the insurance codes. That'll be good enough." Unrelated to that (!), my hospital had announced an interface to let you move your medical records into Google Health. I tried it, because I like to do mashups. Well, turns out the hospital actually didn't have code to move my real medical records - all they did was send my insurance records, just as was being discussed in DC. There are many reasons why the result was a data disaster. For one thing, they didn't send the dates, so everything I'd ever had came across as being a current condition. This triggered incorrect warnings about things that weren't current. Plus, insurance billing codes are much coarser than clinical reality. And then there's the business reality that sometimes people will put in a bogus code to get the system to accept something the patient needs, like a glucose test. Long story short, using insurance records as a proxy for your actual body's condition and history is just a wicked bad idea. I didn't know about the DC politics but being something of a data geek, I wrote this 3500 word post. The Boston Globe called and said it was important and they wanted to publish it. Little did I know they'd put it on page 1 (4/13/09), which caused major sh!t to hit the fan. A week later there was a convention in Boston, and by that time it had become the buzz of the industry. There were people from DC and from national media there, and we were off and running. I'm told that the whole idea of using insurance data was instantly killed. How bizarre is that? Then I got invited to policy meetings about EMrs, I'm told that my testimony here http://e-patients.net/archives/2010/04/testimony-submitted-to-the-meaningful-u se-workgroup-for-its-april-20-meeting.html and here http://e-patients.net/archives/2010/02/testimony-submitted-to-the-adoptioncert ification-workgroup-for-its-feb-25-meeting.html was a key factor in the final regulations, which say that in order to get the federal stimulus $, the doctor has to demonstrate that his/her patients & families are actively engaged with their recors. Pretty freaky. But see, this is kind of the whole point. Going all the way back to the Whole Earth Catalog, Access To Tools: every bit of this story was transformed or enabled by the fact that little ol' me had access to tools that didn't exist a generation ago. The world has changed. Patients and citizens have far more access and power than ever before. And that's cool.
Jon Lebkowsky (jonl) Wed 15 Sep 10 17:38
That's a great note to end this discussion. Dave, many thanks for committing so much of your time and insightful prose here, and thanks to all the others who joined the conversation, especially Julie and Elizabeth, for their frank accounts of interactions with the healthcare system. Please check out http://e-patients.net and http://jopm.org for more information about the evolution of participatory medicine.
Ted Newcomb (tcn) Wed 15 Sep 10 18:29
Thanks for all your great work.
. (wickett) Wed 15 Sep 10 19:47
Thank you ever so much for capsizing the boat! You did every single person in this country an immeasurable good!
paralyzed by a question like that (debunix) Wed 15 Sep 10 23:22
>there was this problem of all the paper records: how to get THEM into the systems?? And the talk in DC was, "We'll just grab the insurance codes. That'll be good enough." That is fucking insane. Billing codes are little tiny boxes into which we try to squeeze you and are no where near detailed enough to represent your clinical condition. No way could I begin to do justice to my patients if they burnt my paper records tomorrow and left me only the billing codes. And I take care of kids, with much shorter and generally less complex medical histories than adults. Yikes.
Jon Lebkowsky (jonl) Thu 16 Sep 10 10:16
Hence "the healthcare mess."
Gail (gail) Mon 20 Sep 10 17:33
Incredible story! Bravo for your work for everybody, building our mutual Access to Tools, Dave. And thanks for visiting! If you're interested, check out the Health <health> discussions, too. You may enjoy how long people here have been organizing to learn and challenge health information. Some of the older discussions in Health go back to the 1980s, and the ongoing discussion is quite solid today.
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