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BIDMC, Google Health and the data transfer problem

e-Patient Dave on the real world issues of moving data around in health care. The punchline—claims-based data without dates is not very useful, which requires those using the aggregators (Google health et al) to do a whole lot more work.

A really, really important article. Go read.

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Rob LightnerSusannah Foxinchoate but earnestMargalit Gur-Ariee-Patient Dave Recent comment authors
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Merle Bushkin
Guest

Rob, I’m all for electronic medical records; I just don’t want them stored on web servers accessible via the Internet. Notwithstanding Microsoft’s and Google’s claims, their records absolutely are NOT secure! Don’t the daily reports of Internet-based personal record theft and fraud alarm you? Millions of Internet accessible records are stolen or lost every year, and even the Defense Department computers aren’t secure! Doesn’t that tell you something? And if you talk to security professionals, your hair will stand on end! I’m all for having a patient’s complete medical record available to every care provider they see because I agree… Read more »

Rob Lightner
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Rob Lightner

Merle – You are right to be concerned about privacy and security issues, but electronic health records are strongly linked with better health outcomes.
Right now, if someone wants to see or copy my written health records, they just have to find one corrupt or gullible person out of the hundreds with access to them. Microsoft HealthVault has this to say for itself:
“The Microsoft Secure Development Lifecycle is applied to the development of the platform, and HealthVault has had extensive security testing from internal and external parties, including penetration testing by “white hat hackers.””
That sounds good to me.

Susannah Fox
Guest

The link to Dave’s post didn’t come through, so here it is again:
http://patientdave.blogspot.com/2009/01/call-for-patients-speakers-bureau.html

Susannah Fox
Guest

Re-posted from e-patients.net: Hi everyone, First, I want to thank e-Patient Dave for his honesty, integrity, and passion. He is shedding light every day here on e-patients.net, his own blog, and on Twitter. Second, I want to thank everyone who has commented. Your questions sharpen Dave’s critique and further everyone’s understanding of the issues. Third, I want to point out that this is not Dave’s “day job” but something he does for free, on his own time, because he wants to make a difference. So if your question doesn’t get answered, ask it again of someone else – or track… Read more »

Merle Bushkin
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Hi Dave, Haven’t had a chance to read your initial post but will do so shortly. However, I do want to respond to your question about using Internet banking because I don’t think it is at all analogous to “Internet Healthcare” — to coin a new phrase. Yes, I do use Internet banking. And every time I do, I get a receipt or copy of the transaction, and every month I get a statement showing me all my transactions. And because each bank or financial service firm I use is a “silo” unto itself, I aggregate all my accounts on… Read more »

Margalit Gur-Arie
Guest

Dave, I’m sure the hospital does not have the ability to clean the records. I do not dispute the value of patients AUDITING their records and making sure the data is correct in the hospital records. My guess is that this cannot be done retroactively, that the hospital will refuse to do it even on a case by case basis, and that most patients will not audit their records because they don’t know how or don’t care enough to do it. There are two options here: One is for the patient to take ultimate responsibility for his records and maintain… Read more »

e-Patient Dave
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Margalit, I don’t disagree, but consider that hospitals may not have the ABILITY to clean up the records. There may be no way to tell which data are correct and which aren’t. Also consider what it would do to healthcare costs if we mandated that hospital staff comb through all their medical records and verify everything. This is what I alluded to when I said that in my day job we sometimes face the question, is it worth the time and money to go back and clean it up, or should we just mark the old data as uncertain and… Read more »

inchoate but earnest
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inchoate but earnest

Margalit wrote: ” What I do know is that if I gave a specialist access to my Google record and told him/her that I cleaned up my problem list and fixed some lab results that didn’t look right, he/she would probably discount the entire record and order all new tests. There goes avoiding duplication of tests right out the window. I believe e-Patient Dave is on to something, Margalit: it doesn’t appear that you read his post – at least the part where he notes that physicians basically do now, regardless the record quality, what you suggest they’d do on… Read more »

Margalit Gur-Arie
Guest

Hi Dave. I did read your post and it would have been funny if it wasn’t so sad. However, I think the proper solution is to have the hospital fix its own mess and clean up the records, or at least maintain clean records going forward, or at the very least work towards that goal. I don’t think the solution is for patients to be expected to go in and clean up their own problem lists. Heck, most folks wouldn’t know what 99% of that list means. The way the hospital maintains and exports the records is absurd. Maybe it’s… Read more »

e-Patient Dave
Guest

Hi Margalit. “Consumers control” was just something I pasted in from Merle’s web site.
Re “the medical record loses all integrity if it’s edited by the” [patient]: you’ve got to be kidding me. What integrity are you talking about? (Did you read my post?)

Margalit Gur-Arie
Guest

Dave, what do you mean by “consumers control”? If we are comparing this to banking, then maybe “consumers audit” would be more accurate. No banks will allow customers to edit data in the account on their own. You can call the bank if you find an error and hopefully have them fix it, but you cannot fix it yourself. I guess that is my major problem, other than privacy and security, with the Google style PHRs. The medical record loses all integrity if it is manually entered or edited by the consumer. Do you think that Chase will approve a… Read more »

e-Patient Dave
Guest

Well here I am, Merle, so have at me. 🙂 (Nice to meet you.)
Did you read my original post about why I’ve decided to go ahead with Google Health?
Besides, as I said in the post, that’s not the point of the post.
Re safe and secure: do you use Internet banking?
Anyway, it looks like you’re touting a “simple, cheap, patient-focused medical record system that consumers control,” which sounds peachy to me. I invited comments listing such systems – go for it.

Merle Bushkin
Guest

Marvelous post! Should raise real concerns among smug healthcare IT vendors, consultants and observers/commentators who think they’ve got it right. The truth is, they don’t!
My only disagreement with the blogger is with his conclusion. An Internet-based system is neither safe nor secure so why embrace it?

John@Chilmark
Guest

I’m with you Gilles on this one. Consumer needs to take more direct responsibility. Yes, it will take some effort, but we are already doing such in managing our bank accts, 401K and at this time of yr, making sure all is correct for the tax man. Time for people/patients to suck it up and take on some responsibility. Of course, that being said, sure would be nice if the consumer had better tools to work with – SNOMED is step in right direction.

Gilles Frydman
Guest

Matt,
I disagree with your punchline 🙂
To me the moral of e-Patient Dave story is that efficient healthcare reform can only occur if and when we personally own and verify our health related data.
Secondly, Dave story shows why European countries are using SNOMED mapping instead of ICD-9-CM coding. SNOMED mapping contains more than 95,000 terms for the disorders and findings hierarchies, while the ICD-9-CM disease classification has fewer than 10,000 codes. It is time to take medical coding in the US out of the hands of the AMA.