Ideas on improving rates of missed/delayed diagnoses in PCP type visits.

Janel Hopper janelhopper at COMCAST.NET
Wed Jan 8 12:48:28 UTC 2014


Dear Alan,
I would welcome decision support! Alternatively or additionally, since pernicious anemia is a phenotype that I actually do typify (Northern European, Hashimotos, Celiac, Lambert Eaton), a clinic wide datamine and screen of affected individuals might catch additional cases of PA being missed by lab equipment and clinicians. The literature I linked to Bob and the Society yesterday is just a smattering of a volume of historical literature that shows these phenotype (if I'm using the term correctly ?) associations.
Thanks for your input.
Janel

Sent from my iPhone

> On Jan 7, 2014, at 7:49 PM, Alan Morris <Alan.Morris at imail.org> wrote:
> 
> Thank you.
> 
> "A retrospective Isobel analysis detected my problem by my 20s."
> 
> 
> This seems to be an anecdotal example of the value of decision-support
> tools - particularly when the clinical problem is unusual or has an
> unusual phenotypic expression.
> 
> Have  a nice day.
> 
> Alan H. Morris, M.D.
> Professor of Medicine
> Adjunct Prof. of Medical Informatics
> University of Utah
> 
> Director of Research
> Director Urban Central Region Blood Gas and Pulmonary Laboratories
> Pulmonary/Critical Care Division
> Sorenson Heart & Lung Center - 6th Floor
> Intermountain Medical Center
> 5121 South Cottonwood Street
> Murray, Utah  84157-7000, USA
> 
> Office Phone: 801-507-4603
> Mobile Phone: 801-718-1283
> Fax: 801-507-4699
> e-mail: alan.morris at imail.org
> e-mail: alanhmorris at gmail.com
> 
> 
>> On 1/6/14 7:32 PM, "Janel Hopper" <janelhopper at COMCAST.NET> wrote:
>> 
>> Hi All,
>> 
>> Some might recall that after great delay, I was diagnosed with pernicious
>> anemia. I think that a lot of what passes for diagnosis is BS. 5
>> hematologists at major institutions now confirm my pernicious anemia. But
>> some clinicians can't get their head around it since I wasn't often
>> overtly anemic. Members of a major clinic might have trouble admitting
>> they were wrong. Easier to call the patient crazy and slap on DXes with
>> no laboratory verification. Physicians SAY they are going to work with
>> patients who do some of the diagnosis lifting somehow through the
>> Internet. My experience is that this is the very rare physician.
>> 
>> They insist on b12 levels and are wholly uninformed about the
>> inaccuracies of these tests.
>> 
>> Rather than hypothesize about misdiagnosis in the abstract, I challenge
>> any of you to do a post mortem of my 35 year saga. I'm sure other members
>> of the Pernicious Anemia Society would also offer up their records.
>> 
>> A retrospective Isobel analysis detected my problem by my 20s.
>> 
>> But the physicians were (and many still are) only willing to consider the
>> case through their limited misunderstanding--such as that overt anemia
>> must always be present with pernicious anemia. Why check the literature
>> since when one is highly confident?
>> 
>> Please feel free to contact me if you are interested in my challenge or
>> more details.
>> 
>> Janel
>> 
>> Sent from my iPhone
>> 
>>> On Jan 6, 2014, at 10:50 AM, Vic Nicholls <nichollsvi2 at GMAIL.COM> wrote:
>>> 
>>> Would a change in medical education to include more EBM, reference
>>> clinical tools such as Isobel or UpToDate/ClinicalKey/MDConsult, help
>>> with less missed/erroneous diagnoses? Would another method of
>>> gathering data from a patient help, in terms of more effective H&P?
>>> Would more emphasis on a physical exam vs. tests help?
>>> 
>>> How about a change in testing and what is tested? I know there have
>>> been articles out regarding radiology exams, that they appear to focus
>>> more on physics and other aspects not related to patient care type
>>> issues.
>>> 
>>> Would an emphasis on understanding lab work help? I know I've been able
>>> to figure things out by understanding what a test is and what it is
>>> looking for.
>>> 
>>> Have doctors ever considered whether patient education would help? If I
>>> have a few educated patients, would I be willing to allow them to be
>>> more participatory than others? What is the attitude towards medical
>>> research brought by a patient?
>>> 
>>> Victoria
>>> 
>>> 
>>> 
>>> 
>>> 
>>> 
>>> Moderator: Lorri Zipperer Lorri at ZPM1.com, Communication co-chair,
>>> Society for Improving Diagnosis in Medicine
>>> 
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>> 
>> 
>> 
>> 
>> 
>> 
>> Moderator: Lorri Zipperer Lorri at ZPM1.com, Communication co-chair, Society
>> for Improving Diagnosis in Medicine
>> 
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