Scott's September Query - Patient Managed Medical Record Repository

[Scott Nesler]

In the October 2008 version of Linux Journal, Doc Searls wrote an
articled titled, “Why We Need Hackers to Fix Health Care”.

In summary Doc Searls acquired pancreatitis after receiving an
unnecessary endoscopic procedure. The endoscopic procedure was
recommended based on an unclear MRI reading. A second team of
radiologist was not able to read the MRI result in a timely manner
because of the proprietary format of the data files. When the second
team finally got around to reading the MRI, they concluded that
procedure was unnecessary.

Doc Searls conclusion was that patient records should be stored in non
proprietary file formats.

After discussing the article with wife, who is an RN, I started
thinking there should be a non hospital, non clinic, non insurance
document repository for storing and accessing patient records. This
repository would be secured by digital cryptology, where the patient
has access to the private key and can delegate who can read their
records by supplying a public key. The rules of the repository
could dictate a universal format for the file and image types.

By putting the patient in charge of their records, the patient has
control over second opinions. The hospital and insurance's
dominance over the patient records, provides them with a property
right which should rightly be owned and regulated by the patient.
I also feel there is a conflict of interest for hospitals being the
barrier of patient records for legal purpose. A single patient
medical record repository would reduce duplicate testing.
Pharmacist would have a more comprehensive medication record.

There are many ideas to expand upon:

1.Who owns the data bank, government or private industry?
2.Doctors, hospitals, and insurance companies will not buy into this
idea. Would legislation be required to make this happen?
3.What are the legal ramifications of the idea from the doctor and
hospital point of view?
4.What are the ramifications for the insurance companies?

Based on our group's diversity: a lawyer, a lab technician, a few
libertarians, a software engineer, and one or more populace, I
thought this would be an interesting idea to expand upon.

[Adam Webster]

I think this is a great idea because is grants more freedom to private
citizens while adding a new level of accountability for doctors and
hospitals. My only concern is that ready access medical records may
make mal-practice suits more common, but once again, there's that new
level of accountability. It may also be extremely expensive to implement.

[Jake Patterson]

1. As far as I know, the data bank is held by private industry, but
it can be accessed on a need-to-know basis by others in the industry
and by the government. I believe that the situation of the
proprietory-format MRI files is an unusual one.

2. Legislation may be required, and getting support would be
difficult. The problem with this, why I may not support it, is that
medical information may easily be abused by employers, mother-in-laws,
the mafia, or people you used to beat up on the playground. Right now
IHC (the company I work for) has a program that let's anyone access
THEIR medical files from their website. I think that in Doc Searls
situation, had the doctor asked in time to see the previous files, the
company that did the previous MRI would gladly have handed them over.

3. Legal ramifications would mostly be found in the "privacy" sector.
My best friends the ACLU would be all over this for all the wrong
reasons. I know there's a lot I'm not thinking of, but law suits
would increase dramatically. Under our current legal system, where
lawsuits are all the rage, I don't think this would be possible.

4. Insurance companies already have state laws stopping them from
denying coverage to those with previous
situations. This just might compound the problem. They already have
access to medical records. I think the most significant thing to come
out of this might be more requirements for diagnosis justification
(I'm not going to pay for your MRI if you stubbed your toe kind of a
thing). Where this might go wrong is that generally, US health care
focuses on "heroic medicine," the miracles, treating disorders,
diseases, and other problems. In the last decade, public health has
made a tremendous effort to make Prevention the new watchword, and
while it is far less dramatic, it is gaining ground. I think this is
a good thing, a necessary thing, even. The ramifications on insurance
companie may go toward reversing this trend.

Just my opinions.