Re: More Regarding the Online Medical Records Trap

[David Farber <dave () farber net>]

Begin forwarded message:

From: "Ed Biebel" <edward () biebel net>
Date: October 10, 2007 11:24:36 AM EDT
To: "Yaron Davidson" <yaron_dav () yahoo com>
Cc: lauren () vortex com, dave () farber net
Subject: Re: [IP] Re: More Regarding the Online Medical Records Trap

Yaron,

I agree with many of your points but I also think you have hit upon a
general trend in the medical community.  I think we are seeing a
greater acceptance of holistic medicne as opposed to system-based
medicine.

Most western health has been based on the premise that different
specialists treat different systems.  The specialists have been less
interested in the various interactions between the systems and focus
on the system of their expertise.  However, I think the concept of the
interactions between the systems and overall treatment of all
illnesses is gaining traction.

As well, I think a common misconception is that medicine understands
how all of the treatments they are applying work.  I've heard more
than once from a doctor that "they (meaning the medical community) was
unsure why a specific drug works the way it does but they know it
works."  As a result, it is not always obvious what history is
significant to what physicians.

Here is a personal example from my life.  One a recent visit to my
opthamologist, he noticed that I have a number of small cataracts
forming in my eyes.  He was somewhat surprised by this given my age
(late 30s) and my relatively good eye health.  He looked at my chart
and then said "Oh, you're on X medication for your allergies.  You may
want to talk to your doctor about switching that.  A lot of recent
studies have shown that this medication has been increasing the risks
of cataracts and given what I'm seeing, you probably should limit your
use of this medication."  (As a note, Viagra has also been linked with
some vision problems if I'm not mistaken so an opthamologist might
find that information equally valuable.)

This physician made a potentially sight-saving diagnosis that wouldn't
have been possible had I "self-censored" my medical history to reveal
only what I wanted.  Does the average have the right to reveal only
the medical history that they want revealed?  Yes, most certainly.  Do
most patients self-censor?  Probably a decent number.  Do they have
the necessary skill and knowledge to really know what information is
pertinent and important?  Most likely not.

This is the double-edged sword with central records.  Clearly, there
is the potential for physicians to see problems that a layperson may
not recognize and not feel important but are obvious to the physician,
especially in holistic medicine.  At the same time, to get the benefit
of that knowledge, there is a loss of privacy.

Ed


On 10/10/07, Yaron Davidson <yaron_dav () yahoo com> wrote:
> Hello Ed and Lauren,
>
> There are places where something akin to a central
> repository for health records already exist, in some
> form. Such as here in Israel.
>
> So from a point of partial experience, I do have some
> comments.
> I have also worked for a time with a doctor, my
> father, in his clinic, so I have some personal
> experience with how these systems behave from the
> doctor's side.
>
> First, a brief cover of the situation.
> Unlike in the US, the medical-care "market" in Israel
> is basically taken by 4 organizations, called "kupot
> holim", which are very roughly equivalent to medical
> insurance company. Except that everyone has to be a
> "subscriber" of one (The money is taken as a special
> tax).
> Doctors are either direct employees of one of these
> organizations and working in their clinics, or work as
> "independents" as free-lancers who have contracts with
> 1-3 of the organizations (the largest typically only
> signs on "exclusive" contracts, so most doctors can't
> work with both it and others) specifying their work
> hours, payments, terms, etc.
>
> They all want to have control over the information and
> treatment provided "their" patients (A patient goes to
> a doctor as a service provider for the medical
> organization, not directly to the doctor).
>
> For now the mode of operation is that each one has its
> own software that the doctor runs in their clinics,
> and these programs store a local copy of the medical
> file. It also reports to central servers, sending
> lists of diagnoses (doctors have to pick from a ICD9
> like list), prescriptions (pharmacies also work with
> these organizations for covering large parts of the
> costs of drugs, and each one has its own "authorized"
> drugs), and special medical procedures that were
> performed (for which doctors are sometimes paid in
> addition to the general per-visit-in-term price).
>
> Recently at least some of them are starting to make
> progress towards switching to a different system where
> there's a single central medical records, and
> individual doctors query data out of it.
> Both now, and in the future plans, the main medical
> information is stored in central servers. It's mostly
> a matter of how much of the other (e.g. general
> examination text and the like) information will be
> there, and what will be sent to other doctors querying
> the record.
>
> With that covered, some cases which are relevant to
> the discussion:
>
> Medical information requests by outside parties:
>
> Currently the full details of the patient visits are
> stored locally on the doctors' computers. So if
> someone have a need for a full "medical file", the
> individual doctors have to be queried individually.
> This means that each doctor needs to have a signed
> waiver over medical confidentiality, has to be paid
> individually (in some cases), and has to response to a
> valid request by individually print the medical
> records in his/her own computer.
>
> Such requests usually comes from things like lawsuits
> over work accidents, but there are other cases,
> basically anything in which a lawyer for some side of
> some trial case can think a medical record could have
> a bearing.
>
> The central organization does have a list of doctors
> that will have records, so they often centralize the
> process by getting the request and then sending
> partial requests to the individual doctors.
>
> This often works well, but sometimes doctors do get
> requests where the waiver of medical privacy does not
> cover them. In these cases sometimes the doctors ask
> for a new waiver. And sometimes they even get it.
> But not always, and when a doctor makes such a request
> the organizations usually feel it is somewhat out of
> line, since the medical data belongs to the
> organization, and not to the doctor, and so the doctor
> doesn't have a real right to refuse passing it back.
>
> With the full-centralized systems this will of course
> not be a "problem". On any request the organization
> could pull the entire record, everything from every
> doctor, at their discretion.
> Unless it will be controlled very well, which I'm not
> sure we can count on, any sort of a medical privacy
> waiver will become a general waiver for any and all
> medical records from all doctors on all cases.
> > 1.  Information that will allow us to quickly
> > identify a chronic problem that a person may be
> > experiencing.  These are conditions that
> > might cause a person to wear a "medic-alert"
> > bracelet.
>
> I have a chronic medical problem.
>
> Whenever I go to a doctor (or a nurse, or a lab) it
> pops up on the screen, read from the central server.
> Together with a list of any other diagnoses I had in
> the past.
>
> I can see how it may be helpful in an emergency, to
> make sure I get proper care if I'm unconscious. But
> this is why I have a card in my wallet, and I can wear
> a "bracelet" if I deem it serious enough (which I
> don't. My decision).
>
> But for the rest of the time (and most of the time it
> won't be the medical emergencies) this is extremely
> annoying.
> If I go to a doctor it should be MY decision what
> parts of my medical history I want them to know.
> I don't need the nurse to know what my problem is when
> I go in to have my blood taken, she just needs to know
> what blood to take.
> I don't need my general physician to know of my
> chronic problem when I have a cold. For some chronic
> problems maybe yes, but not for mine and many others.
> I certainly don't need it popping up on the screen if
> I go to an, for example, ophthalmologist, orthopaedic,
> or anything else for which it is not relevant.
>
> And they don't get only my chronic disease, which I
> normally don't want them to know about, but also a
> bunch of past problems. I don't want them to know
> about any problem I had which is not relevant to the
> case.
> Sure, they're the professionals, and in most cases
> they can assess if it's relevant better than I (or the
> general patient) could. But this is my information,
> and I should have the decision.
>
> Currently, I don't. There is no procedure for me to
> request that past diagnoses will not go to other
> doctors. It's so "useful" that nobody who designed the
> thing thought the should be a problem, and there's
> nobody up there who thinks so now.
>
> Now being a doctor's family I'm more of a special
> case, since most of the doctors in the area I visit
> probably know my dad, making it all a little bit
> personal. But even if it wasn't the case, I'm still
> quite certain I wouldn't want all of them to know
> everything.
>
> > 2.  Information that will affect emergent treatment
> > decisions.  This includes things like "I'm allergic
> > to x medication" or "I have a pacemaker."
>
> Which is why, for example, ophthalmologists keep
> getting popups on their screen about patients being
> allergic to gluten, which isn't really a part of any
> eye medicine out there.
>
> Though I do agree that here it's more a matter of
> better work in classifying and deciding who should see
> what.
> I'm just sceptical that anyone will bother to put in
> the work for such a classification system that will
> know which doctor should see what allergies. Not to
> mention maintaining this database with new drugs and
> devices.
> They don't do it here, and I doubt Microsoft will do
> it as well.
>
> > In addition, it would be "nice to know" things like
> > a quick summary of medical history -- patient has
> > emphysema, high blood pressure, cardiac problems --
> > and what medications a patient takes in order to
> > assess how serious a condition is.
>
> Which is why when working with an ophthalmologist I
> had a popup of medications/drugs the patient, who came
> in for a mild eye infection, is using show up on my
> screen. Including things I apparently really had to
> know like that two weeks ago he was prescribed with
> Viagra. True story. Twice.
> And so on and so forth.
>
> Sometimes it's really convenient, you can go to a new
> doctor and ask him to renew a prescription you got in
> the past from another doctor, even if you don't have a
> clue what the previous medication was and how it's
> called.
>
> A list of medications is potentially useful, so it
> will be shown. To everyone who can access the records.
> Regardless of what the medication is, and if it's
> relevant to the case at hand.
>
> > With that in mind, it may be worthwhile to carve out
> > a *very small* portion of information that would be
> > useful in situations where the patient was "in
> > extremis" and encrypt everything else.
>
> Encrypting everything else isn't good enough. It's a
> matter of the granularity of access control.
>
> Sure, if the system will be designed "right" (which
> ours currently isn't), as a patient I may be able to
> control who will have access to my records (a doctor
> I'm actually visiting) and who wouldn't (my boss).
>
> But that's not good enough. I want to allow all my
> doctors, and nurses, to access my records, but just to
> parts of it.
> Some diagnoses I only want some of my doctors to see,
> or under only some conditions (Do show a new
> endocrinologist the diabetes problem, don't show it to
> an orthopaedic doctor). Some medications I may want to
> have only some doctors see (Do show the Viagra to a
> cardiologist, don't show it to the ophthalmologist).
>
> This is very complex to do. And I'm not at all sure
> it's even possible to do it in an automated/rule-based
> way. There may be some cases, depending on the
> problem, in which I will want some doctors and nurses
> to see information that on other cases they shouldn't.
> The general physician, should he see the diabetes or
> Viagra? Depends on what's the reason for the visit. No
> if it's common cold, yes if it's a recent attack of
> feeling hot flashes?
>
> Between not doing it right, and not doing it, I'm
> personally in favour of not doing it. The opposite of
> what we already have here, and what I believe will
> happen anywhere else with central medical records.
>
> Patients should be capable of knowing the important
> bits of their medical histories, and of choosing what
> to tell their doctors about it. The few bits of
> information that may be critical in emergencies,
> people could carry printed in their wallet/pockets/etc
> if they want to.
> Once you centralize the information, it will get
> shared, and a lot more than people want it to. It's
> too hard to do it otherwise.
>
> Best regards,
> Yaron.
>
>
>       
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