Voice of the Customer: Impact of patient online access (or lack thereof)

This is a nice video from Consumer Reports Health of a patient who is unable to get health insurance coverage, because her physician has coded a diagnosis of “chronic obstructive pulmonary disease,” instead of “asthma.”

From time to time, I get asked, “what’s the business case for patients accessing their medical records online?” In this case, it might allow them to keep bringing business because they could alert their doctor to inaccuracies in their medical record which would allow them to keep their coverage. There might not be an inaccuracy in the first place – when we know our patients will see what we do, it changes our behavior.

In this case, the patient’s business case is clear.

From time to time, I also get asked, “will I get calls/e-mails from patients with questions about what’s in their medical record?” After seeing the impact to this patient and her family, I think this is the kind of e-mail or phone call a physician would be happy to receive.

Kudos to Consumer Reports Health for making their content embedable (is that a word?).


So, help me connect the dots here. Out here on Planet Naive, these things weren't apparent on first reading, and I was puzzled. Having watched the video, I now guess:

1. "her physician has coded a diagnosis of COPD, not asthma" actually means physician error caused her this extreme financial difficulty and it's her problem to fix is. Is that an accurate assessment?

I wonder if the doctor has been asked to fix it and if so what s/he said. If not, there's a grotesque lack of power here (not to mention justice).

I wonder who pays for any penalties she might incur from draining her 401(k).

I wonder what significance this brings to the faction that believes in physician infallibility and patient ignorance.

2. The part about "business case" almost turns my stomach, but I'll step over that for the moment. Does your post mean this?: "If it weren't for this error, she wouldn't have lost her coverage, so she could afford to get coverage and the providers wouldn't be losing this revenue opportunity." Is that what you were saying?

Well, I suppose there's a point there: "Yo, providers, let us proofread your records so your cash flow doesn't get disrupted." That's valid.

Hell, my radiology records said (for my 2003 x-ray) that I was a 53 year old woman. I know I got a little bit of the man-boob thing going on, but not enough to cause that error on an x-ray. (It took me three requests to get them to fix it, but they did.)

On a far graver note, the Minnesota wrong-side kidney cancer case still sticks in my craw. But I suppose there's no business case for preventing that. (Except perhaps something related to "no more payment for hospital errors"?)

Hey Dave,

On #1, Those are really good questions…I don't think the CR people got my post in their trackbacks. I suggest we post either (a) a comment asking them to comment here, or (b) you post the VOC questions on their blog entry. This is the challenge of embedding content, huh. The conversation is all over the place.

On #2, I'm being sort of tongue in cheek, but also saying what I've experienced, which is that sometimes health care providers don't realize the impact of what they do. A misplaced digit on a coding form (or electronic health record) can be devastating to a patient.

By the way, it can also be damaging to a health system, when a provider inappropriately notes a normal condition on a chart as a medical problem.

I brought this up in another presentation I did recently (and you're not going to be happy with the output on that one either) – check out the last two slides.

The idea is that we have to believe that everything we do in health care has a huge impact on the patient, the patient's, family, and their community. When we keep that in mind, it will cause us to recruit their help and guidance in treating them right. When we don't understand that, we're really not being there for people,


Okay, I went and commented there. Might take 24 hrs to appear.

Excerpt: "This sounds a lot like the need to examine one's credit bureau data. I just went to the MIB site and requested a copy of my record from their robot. (4 minute interview plus 3 minutes of intro.) They say I'll get it in 15 days.

Awesome – a little action research courtesy of the blogosphere…looking forward to hearing what you find out. Isn't it great how motivating a person's story is to taking action, what a nice reminder!

So, Mr. Action, are YOU going to go request yours and see what it's like? <wink>

It'll be interesting to see what pans out: they say there IS no MIB is you haven't applied for individually underwritten health or life insurance in 7 years. I wonder what they mean by "individually underwritten." Are they saying I have no MIB record if I've only had group insurance?

Well well WELLLLLLLL, looky what we have here: it's e-patient Dave's very own MIB response! Delivered in a right timely fashion – requested on 8/27, mailed on 8/29, received today.

The reality is very interesting. It contains two items. I hereby disclose all to the universe, foregoing all rights to ever getting this toothpaste back in the e-tube:

1. 9/21/01: Blood pressure, significant to health or longevity. Currently under treatment. Information obtained from licensed physicians or medical practitioners, hospitals, clinics, or other medical or medically related facilities. Within 3-5 years prior to application.

FASCinating! So, sometime 1996-1998, somebody reported me with high blood pressure, and said I'm under treatment.

Bingo. I do confess it; mild hypertension. And the letter brags, in boldface: The above report from XYZ Life will be deleted on 9/22/08 as all reports more than seven years old are eliminated from our files.

But now the fun starts. The second item, from ZYX Life, is dated 11/13/06 and is identical, except that it ends:

At some indefinite time in the past.

Booyea! The party of the second part quotes the party of the first part! No further data, but the record (nee 1996-98) lives on, rebranded “sometime in the past”!

But wait, you say; how do we know the second was quoting the first? Well, later in the letter is a required disclosure of every inquiry there's ever been on my record (similar to credit inquiries), and guess who inquired on 9/1/06? ZYX life, which apparently then posted *back* into the report in November, giving my record a new life (so to speak).

Oh, did I say “every inquiry there’s ever been”? How silly of me &ndsh; although the *information* stays for 7 years (and can evidently be "renewed"), the inquiries are erased after just two years.

Now for the math: that inquiry was made on 9/1/06, and my letter was printed on 8/29/08 … the very last business day before that inquiry was due to be erased (9/1/08). If I’d been a day later, that little paper trail of “who was quoting what” would have been gone forever.

Oh, and did I say “every inquiry”? Actually,

The identity of the inquiring member company is not disclosed when [it is an] MIB member company.

Well, at least their confidentiality is ensured.

And, to return to the issue of the person quoted in the Consumer Reports video: accuracy of the records is not the responsibility of the MIB.

The original information on which the reports were based is in the possession of the reporting company. If this does not provide sufficient information for your purposes, please contact the Medical Director of the company that reported the information.

And good luck!


Here's what 866-692-6901 told me:

"We are having trouble understanding your response, please try calling again later, *click*"

No web request form, sadly,



Follow-up. I tried again today. The recording says, "We are closed."

So, it's an automated system that is only turned on certain times of day. What does this say about the interest in helping patients?

The only conclusion I can draw is, "not very interested."

Thanks for taking the effort to bring this story forward, it's a really good one to use in future presentations about the current state of health care,


Ted Eytan, MD