Today’s Boston Globe reports Beth Israel halts sending insurance data to Google. I commented:
I’m the patient in question. In her original piece 4/13, Globe writer Lisa Wangsness did a terrific job of accurately capturing both the details of this complex story and what it signifies, which could easily have been misconstrued. Indeed many bloggers did misconstrue it, shifting the focus away from the key lessons. I urge anyone to read my original story about what actually happened, and Lisa’s original story.
I want to extend one thing, though: they’re no longer sending billing data to *anyone*, including Microsoft HealthVault.
One thing’s become clear to me this week, from things others have written to me: what we discovered in this exercise has only scratched the surface.
DO NOT BLAME THIS ON BETH ISRAEL DEACONESS. It’s systemic, it’s everywhere. I work with data in my day job, and I can tell, the entire healthcare culture lacks the kinds of strictly enforced data quality processes that exist in other industries.
Any system will naturally accumulate garbage data unless there are strict controls on who gets to change what, and a history of who DID change what. And from what EVERYONE has been telling me, medical records systems today lack those controls. So we have a clean-up task ahead of us and we just need to get started.
There may be exceptions (please share them with me!) but my baseline assumption is that every shred of information in our online records needs to be verified before we can use it going forward. It’d cost WAY too much for any hospital to do that, but you can. And you better, or your record might show (as mine did) that I’m a woman with migraines who had a stroke in the past.
Yes, my record contains (or contained) statements of all those things. My record is 98% accurate, but it also says all those things.
What’s in YOUR wallet, medically speaking?
A lot of people are saying a lot of things about this subject. Let me make clear, I personally have only one agenda: to empower, equip and enable engaged patients to get control of, and be responsible for, their medical records.
That is a fundamental part of playing an active role in participatory medicine.
p.s. A request: if you agree with my comment, please go click the RECOMMEND link. And/or, add a comment of your own. (Participate!)
I have to admit to you that I am shocked on several levels by what you have to say and by what has happened to you, for these reasons:
I have suffered from a complex facial pain condition for more than six years. During that time I obtained almost all of my records from each and every treating medical provider (at least 30) and I rad them in their paper format. I obtained all of my records so that I could pass them on to each new doctor and also so that I knew what was and what was not in them. Finally, I needed them to try and track down an effective treatment to what was considered an untreatable condition.
Secondly, the reported diagnosis codes were probably no more than six–but the writings in my records as with my conversations with my doctors–showed far more, and the most important diagnoses. Therefore, I would not expect–nor can I imagine that doctors would expect, that simply by sending DX codes that my health history would be covered.
Thirdly, my records not only show dates and who made what DX, they also show valuable information on treatments, meds, etc.
Fourthly, at best, my records were incomplete. I therefore, developed my own form that I wrote out to specify, in bulleted form under specific headings that grouped this info. for easy access by the doctor, my own data. This is part of my record, but it would never appear if my DXs were merely sent.
Finally, like you I also work with data in my day job, I’m also a writer and I have NO medical experience, but as someone who found a medical solution to what nearly 30 healthcare providers thought was an irreversible, degenerative pain condition, I relied heavily on my medical records–both those created by my heathcare providers and those that I created.
Finally, I’m unclear as to why it is so difficult to obtain information that is entered in a complete form, and transmit that information to a third party database. There are technological solutions that can take input electronic files and retrieve the information contained in these files, classify that information, and return results–such as a diagnosis with dates.
I’d appreciate your comments, obvioulsy I’m new to this discussion, but I’m an active member of several patient groups….
Welcome, welcome, welcome, Pat. Thank you so much for speaking up.
Gilles Frydman (one of our bloggers and senior members here) led me today to a very informative post by Microsoft’s Peter Neupert, the guy at the top of the HealthVault project. It’s titled Tear Down the Walls and Liberate the Data.
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I have been following your story and the many comments that have been made in different blogs. First, I am not surprised, unfortunately, at your experience. I witnessed some of this, only on paper, working with my ill father who had records both with the local VA hospital and with private practice physicians. We had to be on top of irregularities and inconsistencies as to his current and past treatments as well as diagnoses so that all parties were properly informed. Had we tried to convert those over today on my HealthVault account, we would have probably experienced something similar to your story.
I agree that an informed patient is invaluable to the healthcare process. I have seen a couple of comments from physicians on other blogs who have figuratively “shuddered” at the thought of having their patients have complete access to their medical records. I am sure that there will be some patients who would prefer to defer to the doctors, not desire to have the responsibility of maintaining their records and leave it at that. I think that there are far more who would.
I also enjoyed Gilles’ recent post. There is a lot to be said about personal health records, and I’m glad the conversation is going. Keep it up!
hi,I am not surprised, unfortunately, at your experience.I agree that an informed patient is invaluable to the healthcare process.
Thans for sharing.