From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record”
by e-Patient Dave on November 15, 2009An important study just got my attention. Patients and clinicians in different cities were asked questions about concerns and preferences. Titled “Insights for Internists: ‘I Want the Computer to Know Who I Am’,” the study reports: (emphasis added)
- Patients do keep their own medical records
- They want access to everything in their record
- Privacy worries “appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers”
“health professionals professed far more concern about maintaining privacy than patients.”
- They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less
Boy do I wish we’d all known about this during the debates about meaningful use and medical records this summer! There was so much talk about “Well what do people want?” and “Won’t patients be overwhelmed? They won’t be able to understand it.”
And here’s the thing: it was published back in May, and the research was done THREE YEARS AGO, Nov. 2006 to Jan. 2007.
How’s that for a great example of the “lethal lag time” we talk about in the e-patient white paper? That’s the delay between when new knowledge comes into existence and when it’s made its way through the publication system, for use by decision-makers. Three years, in this case.
Thanks to the always magnificent, e-patient-minded Ted Eytan, MD for highlighting this study on his blog Friday.
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Tags: blog, Case Thanks, Clinicians, Debates, Decision Makers, Desire, Emergency Settings, Existence, Eytan, Health Professionals, Insights, Internists, Maintaining Privacy, Medical Record, medical records, People, Privacy Worries, Publication System, Record Privacy, Ted
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4 Responses to “From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record””
[...] The reason for this development is that there are few places that keep track of what is published in the field. A good example is the remark by e-patient Dave this Sunday: Boy do I wish we’d all known about this during the debates about meaningful use and medical records this summer! There was so much talk about “Well what do people want?” and “Won’t patients be overwhelmed? They won’t be able to understand it.” From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record” [...]
I’m stunned (in a good way) – as the above comment says, that article was posted on their site the same day.
Here’s where you can subscribe to updates from their site.
Dave,
I’m wondering if the same issues around privacy exist for controversial diagnoses. For example, psychiatric patients may not want their records to be made fully electronic, for good reason. To this day, discrimination exists even within the medical community against psychiatric patients who have physical illnesses. Which is why they tend to have higher rates of morbidity and mortality than others.
It can literally kill you if a Doctor finds out you are on antidepressants.
And employers? Automatically fire anyone with a psychiatric diagnosis. Child welfare authorities are more than happy to seize children from parents on a precautionary basis, with no evidence of harm. Even though patients who take their medication are better workers, and better parents.
Same for women who have had abortions, or even prenatal diagnosis. In the old days, they would have been recorded correctly in paper files but only billed as D&Cs, which could be post-miscarriage D&Cs, to protect the lives of Doctors and the identity of patients. Pro-lifers have stated quite clearly that they will kill women. Do you think they can’t hire a hacker? I bet they can.
I appreciate that security exists for people concerned about privacy, but the problem is that even one slip can destroy a life, or destroy a career. And the penalties so far are a joke. They need to be jailable offenses.
A leg x-ray is not the same thing as a depression diagnosis.
So I am quite happy to sit back and wait a nice long time for E-Records. I like staying alive.
[...] e-patient info site by e-Patient Dave on November 16, 2009 In last weekend’s post about “patients want all their data” I said I wished I’d known about the article (published mid-May) during last summer’s [...]
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@TedEytan highlights an older study. Great info! Patients want to share - it might save our lives.
