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—By Joana Ramos,
MSW
Access to medical records is an important
issue for cancer survivors. We know that vital information
about our conditions, tests, treatments, results, and much
more is contained in them. For those diagnosed in the late
20th Century, copies of these may have been more routinely
provided and hence we may take access for granted. In reality,
gaining the right see and get copies of one's own records
has been a decades-long process, which only very recently
has become a near-universal right in the USA. For those
wanting to learn more about the issues behind patients being
able to get their own records, the overview below will be
of interest. For everyone, here are the how-to basics.
Requesting Copies of Your Records
1) Ask. Your first step should be to simply ask your
providers for a copy at each appointment. You may be pleasantly
surprised to find that s/he will be happy to oblige your
verbal request. You should also ask about what the lag time
is between transcription and when the print copy of progress
notes is sent back to the doctor. In many oncology practices
it is now routine to hand patients copies of their labs
as soon as available. Physicians who prepare their own records
by computer may make them readily available to patients.
When you have other procedures or diagnostic tests done,
you can ask that your name be added to the "send to"
list for the results. You will usually be asked to sign
a release authorizing the records to be sent to yourself.
2) Utilize provisions of the HIPAA law
to request copies of your medical records. As part of
the full patient information privacy provisions of the Health
Care Portability and Accountability Act that became effective
in April 2003 came the right for most patients in most circumstances
to review, correct, and receive copies of their own medical
records. Every facility covered by the law must have a procedure
in place to comply with patient requests, which must be
made in writing. The facility has 30 days to respond to
your request, and may charge a "reasonable fee"
for the copies. The HIPAA rules provide access to records
for patients in all states and replace any prior state-level
restrictions on access. However, if states offered broader
access than HIPAA and/or specified fee limits on copies,
then these benefits remain in effect.
3) Utilize the federal Privacy Act to obtain
records if you were treated at a federal facility. The
Privacy Act became law in 1974, and governs records of all
patients who received care in military, Peace Corps, Veterans
Administration, U.S. Public Health Service, and Indian Health
Service and other federal facilities. Presumably this also
applies to patients who were evaluated and/or took part
in clinical trials at the National Institutes of Health
facility in Bethesda, MD. If this is your case, contact
the facility for instructions on how to request your records.
A Little History
It's helpful to consider the history and evolution of both
medicine as a profession and the consumer rights movements
in our country, in order to understand why patient access
to medical records has not always been routine. Prior to
WWII, when few Americans were able to attend college, the
medical profession was held in great esteem due to the advanced
education of physicians, which also conferred a certain
social status. This contributed to a proprietary tradition
wherein many doctors were concerned that patients would
be unable to understand medical terminology, and that they,
the experts, should have sole control of any information
about patients. Societal norms also meant that patients
not ask to see their own records, as a request might mean
that they distrusted the doctor. Patients naturally deferred
to physicians and physicians controlled any and all access
to information, whether verbal or written.
With the sweeping social changes that stemmed
from the Civil Rights Movement, and greatly improved access
to education nationwide, ordinary citizens began to understand
that they too had rights, and having a say about their own
medical care was one of them. The consumer rights efforts
that began in the '60s and '70s, included the notion of
patient rights and access to one's own medical records.
Self-advocacy became an important part of the civic process.
Physician groups, however, remained strongly opposed and
getting access became a struggle. What resulted was a patchwork
of laws, with some states passing laws that allowed access
and under certain conditions, and other states taking no
action and thus denying the possibility. Sometimes a court
order was necessary for a patient to obtain records, a very
difficult process. Interestingly enough, while the struggle
continued in civilian life to the present day, the Privacy
Act of 1974 allowed those who received treatment in federal
facilities (e.g. those of the military, VA, Public Health
Service, etc.) to receive copies of their own records.
As a freshly-minted MSW in the late '70s working
at the Seattle VA Hospital, I recall being pleasantly surprised
to see that patients were not just allowed access to their
records, but required to be responsible for bringing them
to appointments. While most vets may not have been reading
their records, the rationale seemed to be that this was
the best way to ensure that one's records would be available
when needed, due to the mobile nature of military life.
Meanwhile, patient access was still a hotly-debated topic
in the rest of the community.
The Era of Empowered Patients
On into the '80s and '90s, other societal trends contributed
to the philosophical underpinnings of the access that now
has been legislated. Patients in general became more aware
that they had rights, and asked to participate in making
decisions about their own care, and to change procedures
that seemed detrimental. (Good examples are the movement
for family-centered childbirth and the efforts to humanize
care by parents of children with special needs, and the
women's movement in general). And as patients also became
more educated about their own health, they noticed that
doctors didn't always know everything and it was logical
to expect to be a partner in one's own health care. Indeed
the time-pressured changes in medical practice have made
it imperative that patients be able to advocate for themselves.
The subsequent development of the Internet, which allowed
literate people with specific diseases to communicate rapidly
with each other, and to gain access to medical literature,
that previously was available only to skilled researchers
able to go to academic libraries. The Internet revolution
contributed greatly to the rise of the informed consumer.
This is of course the history of the Long Term Survivors
e-mail discussion group and the Cancer Survivors Project.
Patients Bill of Rights
Access to medical records became one item among a spectrum
of rights and responsibilities that many patients wanted
for themselves. Momentum grew at local, state, and national
levels to create a patient bill of rights that would include
such access. While we are still without a comprehensive
national Patient Bill of Rights (efforts towards legislation
started in 1996, and in mid-2001 different Senate and House
versions were passed, but consolidation into law has been
deferred due to other pressing national issues and lack
of support by the current President) many medical facilities
and health care organizations have their own bill of patient
rights and responsibilities that include access to one's
own medical records.
HIPAA
Fast forward now to April 2003, when the full provisions
of the Health Insurance Portability and Accountability Act
(HIPAA) became effective, including access to one's own
records, in most situations. The HIPAA privacy regulations
guarantee consumers organizations the right to inspect,
receive a copy of, and amend their own medical records and
restricts when and how "covered entities" that
maintain medical records may sue and release protected health
information (PHI). The definition of PHI is that the information
must be both health information and individually identifiable.
There are certain conditions, such as regarding psychiatric
records, in which the provider (as a "covered entity"
under the law) may deny access to records. References to
the full law and a guide to its interpretation are included
at the end of this article
So what does this mean to us as patients?
It means that in almost all cases, we can request copies
of our medical records, make corrections to them, and have
the opportunity to discuss the contents with our health
car providers. Any state access-to-records laws that already
were in place before the effective date for HIPAA are still
in force if they permit the same or greater access (but
not if more restrictive). Covered entities may charge a
"reasonable fee" for copying, and once again,
are required to follow any existing state laws that set
limits on fees that may be charged. Requests for records
must be in writing, and providers have 30 days from receipt
of the request to make the records available. If unable
to provide them within this time, they must issue an explanation
in writing and will be granted another 30 days to comply.
Likewise, if another entity holds the records, the provider
must give consumers a written explanation of how to get
said records.The law has been in effect a little over a
year now, and not all patients yet know that they have this
right, and there is not yet enough experience to know how
it is playing out in real life. Nevertheless, it is a very
important new law that should go a long way to help us as
cancer survivors who have a vital need to know anything
and everything about our own health. Each medical provider
(covered entity) is required to establish a procedure by
which patients can request their own records, and it is
up to us to inquire about it if the information is not readily
available.
Tips on How to Get Your Records
If you need to make an official request for
your records, it must be in writing. Medical facilities
may have a specific form available, or you may write a hand-written
note or send a fax. Usually it is not possible to send an
e-mail request, as a signature is required, but practice
varies on the legality of e-signatures. Some facilities
will allow you to have a standing request for a certain
time period, while others require a new signature for each
request.
Sometimes you may still encounter personnel
who do not know that patients have a right to their own
records, so it can be helpful to prepare your own simple
release form that you sign and date to give them. If you
encounter this situation, it is a good idea to contact the
clinic or facility manager to discuss the matter.
Some providers may ask that you schedule an
appointment to look over your chart (and you may be billed
for the appointment). This can be an opportunity to ask
questions, and also to select exactly which pages you want
copied, which can save you money if you will be charged.
Correcting Your Records
Upon inspection, you may find that there are errors in your
medical records. Patients also have the right to correct
mistakes that they find, which you can do by crossing out,
inserting correct information, and initialing the change.
You should definitely point out these errors to your physician.
It goes without saying that it can be crucial
to your ongoing follow-up and treatment to correct mistakes.
Personally I found notes in my own chart that said that
I had TB and breast cancer, neither of which was true. If
I were unable to speak for myself, errors such as these
could be critical in deciding a course of action.
Sometimes the errors are the result of free
interpretation of physicians' handwriting, or misunderstanding
dictation. Others represent the transcribers' taking license
with information that they did not understand, and did not
ask about. In my own case, this appears to be why several
mammogram reports were prepared that said that I had breast
cancer. My lymphoma first presented as a breast lump, which
was removed. So when I answer the question on the intake
form "have you ever had a breast biopsy?" the
answer is "yes"
What About Access to Previous Medical Records?
For those of you who underwent treatment some time ago,
the answer to the question is much more complicated. Unfortunately,
it may not be possible to obtain copies of "old"
records, for a variety of reasons.
If you were treated at a time when it was
unheard of for patients to have access to their records,
for example long ago as a child, your parents probably never
asked and received them. The facility where you were treated
may no longer exist; the physician may have retired along
with the files from the practices. You may have moved out
of state, and moved multiple times. In some states there
are laws stipulating how long records must be saved, and
after that time, they are simply discarded. In some cases,
they may be archived and you may be able to request copies,
albeit with a healthy wait.
If you are a childhood cancer survivor with
living parents, you should ask them if they have any records.
You may be surprised to find that they might, or that they
kept some notes of their own of different treatments that
you had.
While it can be very frustrating not to be
able to get the details of your past medical history, bear
in mind that your presents treatment will be based on current
information as well as the collective experiences of other
survivors. Don't blame yourself, or your family if records
are not available. In most instances they did the very best
that they could, and we all have to live with some degree
of uncertainty.
Keeping your own records
From now on out, you are probably keeping copies of your
own records. While there are now commercial personal medical
records products to help you keep records and organize your
files, many people like to use a do-it-yourself approach.
You may want o create a filing system, keep a note book,
utilize a datebook to write in pertinent information to
accompany reports and tests results etc. Some may want to
create files on their computer. Whatever method you choose,
figure out a way that you will be able to find what you
need.
Remember, you are the expert on yourself,
and now there is a law that can help you too.
Selected Resources
on Access to Medical Records
Committee on Government Reform and Oversight,
A Citizen's Guide On Using The Freedom Of Information
Act And The Privacy Act of 1974 To Request Government Records,
First Report, March 20, 1997.
http://www.tncrimlaw.com/foia_indx.html
HHS, Protecting the Privacy of Patients' Health
Information: Fact Sheet, 14 April 2003
http://www.hhs.gov/news/facts/privacy.html
Duenwald, Mary, The Consumer: How Patients
Can Use the New Access to Their Medical Records, New
York Times, May 11, 2004.
Hoffman, Barbara, A Cancer Survivor's Almanac:
Charting Your Journey, National Coalition for Cancer
Survivorship/JohnWiley, 2004
Keene, Nancy, Working with Your Doctor:
Getting the Healthcare that You Deserve. Sebastpool,
CA: O'Reilly Patient Centered Guides, 1998.
Privacy Act of 1974
http://www.usdoj.gov/foia/privstat.htm
Ross, SE and Chen-Tan Lin, The Effects of Promoting Patient
Access to Medical Records: A Review. J Am Med Inform
Assoc. 2003 March; 10 (2): 129-138
(Accessed on 2 June 2004 at http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=150366)
Schwartz, Sonya, Rights to Access Medical
Records Under the HIPAA Privacy Regulation, Health Assistance
Partnership, Families USA, April 2003.Pl2003-01
http://www.healthassistancepartnership.org
Thomas, Lucy, Oster, Nancy, and Josef,
Darol, MD. Making Informed Medical Decisions. Sebastpool.
CA: O'Reilly Patient Centered Guides, 2000.
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