Do I need my data ASAP to be an empowered e-Patient?

When I first googled "endocrine" and my symptoms after being told by my PCP that whatever it was I had was thus related, I found the Cushing's Help support group. It was with the input of the members of the support boards there I found out late-night serum cortisol was one way to test for Cushing's Disease. So, I convinced my PCP to order one for me. She did, but with the caveat "I don't know where you will get this done at that time of the night!". I did convince the large hospital lab to do it for me after calling various labs for two days.

When my PCP got the results, her nurse called with a "it's normal" (left on my voice mail). I didn't question them. Long story short, several months later the same CH support folks told me I should get my records because often they contained information I was never told. I had never questioned anything up to this point. So, I requested and paid for my records from this doctor. Close to $50 and almost 30 days later, I went through them. A lot of things surprised me. One more than anything:

What? I had a 9.7 ug/dL serum cortisol at 11:00 PM?

The lab ranges on the report were for 4:00 PM. Serum cortisol ranges have only been established for 8:00 AM, 4:00 PM and around midnight. Midnight serum cortisol should be close to zero. Since few labs ever draw the midnight serum cortisol, they don't put the ranges on the lab reports. My PCP erroneously assumed the range was correct and my test was normal.

You can see by my scrambled notes on my lap, I was anxious to correct this. I faxed a copy of this report to my PCP with my annotations, and also left a message. She did not accept email. She was shocked and nicely ordered more for me to do, and I had a lot more high results after that.

All of this is important to me today because of an ongoing discussion on e-patients.net: Health Sites: Some Are More Equal Than Others . If I had asked for and received my "data" sooner, I would not have wasted months with no testing. I also would not have known to do that as quickly without input from support folks. This brings the question in my mind:

Do I need my data asap to be an empowered e-Patient?

Maybe. We need to be very careful about assumptions we make from our own experiences. Everyone does not have the same experience, nor is every support need the same. It is very hard to be objective in a subjective world. In my world, I believe I do.

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Microsoft Healthvault and Mayo Clinic's Health Manager

Making HealthVault Personal « Chilmark Research

"Today, another app is now available on HealthVault that holds promise to dramatically improve the HealthVault experience, Mayo Clinic’s Health Manager. While at HIMSS, Microsoft gave me a preview of the new Mayo Health Manager and last week I had the opportunity to speak directly to the Mayo Clinic’s Dr. Phil Hagen about Health Manager." To read more....

Mayo Clinic Broadens Microsoft HealthVault-based Service

"Using Mayo Clinic's network, users of its health-care services can keep track of their health information and information for family members, and receive health guidance and recommendations from Mayo that is customized for each person, the companies said." To read more....

Visit Mayo Clinic's Health Manager....

Free Webcast on using Mayo Clinic's Health Manager....

See where Microsoft's Healthvault can be found...

Patients aren't smart enough? Savvy enough? What?

I've been reading a few blogs lately. Among there are several medical blogs. I'd like to point out a few where I've been active in the dialog/comments. As a patient, I think they are important to the healthcare problems in the U.S.

Dr. Rob writes about being "The Backstop" for his patients. He says,

But there is a catch. Despite the fact that I am not the one ordering the test, once I have it in my chart I am responsible for the information. Many of the abnormal mammograms state specifically that “the patient has been notified.” I still don’t trust it. If I put a mammogram that is suspicious into my chart on the patient and don’t call the them up to make sure they have been called, I could potentially be prey for malpractice attorneys. So I call every woman whose mammograms are suspicious. I take over the responsibility. There have been times when I am the first one to tell the patient.

I hold the premise the patient should be his/her own repository. You can read our dialog here. I hope you have some insight into it and will share.

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KevinMD posts about Searching for health on the web often leads to the most dire diagnoses. Kevin quotes the article, saying "To no one's surprise, 'self-diagnosis by search engine frequently leads Web searchers to conclude the worst about what ails them'." He was quoting the article to which he linked, but that article did not correctly represent the study it was using. The study,
Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search did not exactly say that. You can read my statements about that here.

I've previously blogged about cyberchondria on this blog: Speaking of "googling"..... and as a "reader's take" on KevinMD's blog: Robin S.: A marriage made in heaven

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Dr. Wes had some good points on "Why Hospitals Like Robin Hood Economics" and was very supportive of my comments there.

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Another KevinMD article caught my eye: A real Dr. House, or did this physician benefit from prior studies?

David, a physician commenter on that piece was open and candid, which I appreciated. Again, some great dialog there. Take time to look over it and comment if you wish.

Speaking of "googling".....

It's not just a proper noun anymore. "Google" is a verb. To google, googling, googled, have googled, will google, am googling....

Google had revolutionized information. Wait, let me rephrase. Google has revolutionized the usage and dissemination of information. Among other things, I teach database programming and design, and I often emphasize to my students how useless information is until it's properly organized and is retrievable in an understandable fashion. This is very true and an axiom that Google's designers took to heart.

Nowhere has Google transformed the huge repository of information collection, dissemination, and organization more than in the health industry. Do you want to save your health information and share it with your health care professionals? Try Google Health. But wait... Is Google good for your health records? My insurance company must think so: Google Health Signs on First Insurance Partner. So does my pharmacy: Walgreens (WAG) Partners with Google (GOOG) Provide Pharmacy Patients Access to Prescription History.

Looking for health resources? Try Google Directory. Or better yet, just "google" your symptoms. Something is sure to pop up. It did for me. That's how I found http://cushings-help.com/ . And it was with the support there that I found doctors who could help me.

Speaking of doctors. Yep, they "google", too. Doctors using Google to diagnose illnesses is an article based in Australia which says:

...a team at the Princess Alexandra Hospital in Brisbane identified 26 difficult diagnostic cases published in the New England Journal of Medicine last year, including obscure conditions such as Cushing's syndrome and Creutzfeldt-Jakob disease.

They selected three to five search terms from each case and did a Google search while blind to the correct diagnoses. Google gives users quick access to more than three billion medical articles.

The researchers then selected and recorded the three diagnoses that were ranked most prominently and appeared to fit the symptoms and signs, and compared the results with the correct diagnoses as published in the journal.

Google searches found the correct diagnosis in 15 (58 per cent) of cases. Respiratory and sleep physician Dr Hangwi Tang, who led the study, said: "Doctors adept at using the internet use Google to help them diagnose difficult cases."

Before you go bashing Australian doctors, you might want to read Googling Medical Topics Returns Decent Results by two US doctors. (Dr. Fink is an emergency physician at St. Barnabas Medical Center in Livingston, NJ. Dr. Miller is an emergency physician at Clara Maass Medical Center in Belleville, NJ.)

And although physicians are secretly Googling difficult medical situations, many aren't thrilled that we're doing the same thing . They have even coined a new term: Cyberchondriacs . I bristle at that a bit. I was asked by a physician one time if I was causing all my problems by "reading too much". I asked her if she had that problem in med school. I made my point.

While the media has made the term demeaning, the Harris Poll thinks otherwise: "Data from other Harris Interactive research show that, increasingly, cyberchondriacs are using the sites of established organizations – academic, governmental, pharmaceutical, etc. – rather than using "pure ehealth" sites."

But back to "Googling"...... Some physicians have bridged the gap between patient "googling" and their own "googling". They are saving time with smarter googling.

"When FP Jeff Pearson in suburban San Diego wants to teach a patient about the characteristics of a suspicious-looking mole during an office visit, he types a phrase like "malignant mole" in a little box on his computer screen, and a click later, an array of images appears."

There is something for all of us when we go "googling". Information is always valuable. There are information Nazis who would prefer to keep it to themselves to dole out at will, but D-day has come for them. Or is that G-day? Health information for all is here, and that includes "googling for all".

I wonder if "google" is now in the dictionary........