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Imagine my dismay when hearing from a patient that she read about
herself on the Self Psychology website. She said, "I thought that you
had another patient like me, and then I realized it was me." A piece
that I had written for the online newsletter, under password protection
so that only members could read it, was now accessible to anyone. After
the decision was made, and long after the article was posted, I was
given a general notice that the site was now open to the public. This
is not meant to be critical of the decision, but rather to serve as a
cautionary tale. I appreciate the opportunity to write about my
concerns regarding case material, confidentiality, and the Internet.
The above example illustrates the inherent problems in writing about
clinical work with patients, and how the problems are amplified by the
common use of the Internet. There is no debate about the need to
disguise identifying information about patients—we are legally and
ethically bound to do so. But what adequate disguise is, and how the
disguise process affects the case report, are issues open to debate.
The highest level of disguise is to use a composite case, but as a
colleague found this week, even that does not ensure that the case won't
be recognized. The most common way to disguise is to alter the
significant identifying features of the case—changing reported
occupation, marital status, age, family composition, even gender. This
method generally meets the standard of protecting the patient from being
recognized by others, but it does not protect the patient from
recognizing his or her own words.
The issue of patients knowing about their analyst/therapist writing
about them is quite complex. Some analysts/psychotherapists have
adapted the policy of asking patients for specific permission to write
about them. The patients may be given the opportunity to see the
writing ahead and to edit it. Clearly this practice ensures that the
patient is completely informed and has "signed off" on the content.
Others believe that informing in this way potentially interferes with
the therapeutic process and that editing may significantly alter the
clinical material. Further, there is the troubling question about what
is informed consent. Does a person who is in a therapeutic relationship
have the ability to freely give or withhold consent?
Some analysts and therapists have adopted the policy of generally
informing and seeking permission at the beginning of the treatment.
This is done with the belief that, at the beginning, there is less
likelihood that the transference and other relational issues will
interfere with the patient's ability to decline. By not identifying
that the patient is being written about during the course of the
therapeutic process, it is believed that it will be less disruptive to
the process. This stance is also problematic, as the general nature of
permission being sought does not address the specifics of what is being
published, where and when. Further, if we believe that the subjectivity
of the analyst is involved in the process, the writing is definitely
going to influence the process, and in potentially unacknowledged ways.
Some who write and present about their patients only write after the
treatment process has ended. Obviously, this prevents the process of
writing from having an impact on the analysis. It does not, however,
prevent the written material from having an impact on the patient, or on
future work. Writing on old material also may lack the vibrancy and
immediacy of work that is in process. Many therapists refrain from
writing about anyone in the field out of concern for confidentiality and
exposure. And some do not write at all, as they do not feel that they
can protect their patient's process if they do.
While not posing answers to the issues identified, I would like to
address the specific issues related to clinical material being posted on
the Internet. Unlike journal articles, the rules regarding the
publication of material on the Internet can change, and affect access to
what is written. In other words, there is no assurance that access to
the material will be limited in any way. With the advent of Google,
writers must assume that the person that is being written about will
have access to the writing and may very well find it on the Internet.
If a case is presented at a conference, such as ours, and then the
components of the conference are summarized for an online newsletter,
someone else's writing about the case will also be accessible to the
public. This is often done without the permission of the person who
presented, and without that person previewing and editing what is posted
online. So, people who present clinical material cannot assume that the
material won't be referenced in exposing ways online.
I do recommend that Internet publishers have clear policies regarding
public access to the material, and that if a change in policy is made,
that it not be applied to works without gaining the permission of the
author. I also recommend that anyone who presents clinical material be
asked for specific permission before that material is published
electronically (as one would do if it were published in traditional
venues) and that the presenter be given the opportunity to edit the
piece. Further, I recommend that anyone presenting or publishing give
careful thought to the issues related to confidentiality and exposure
ahead of time. The therapist should not present or publish unless the
idea that the patient could read about his or herself is acceptable. To
believe otherwise is naïve in today's electronic age. Finally, I
recommend that we continue to address these issues...and keep writing.
Endnotes
Judy Leopold Kantrowitz's book Writing about Patients:
Responsibilities, Risks, and Ramifications, 2006, Other Press, New
York is a good reference.
Amy Eldridge, Ph.D., is Dean of the Institute for
Clinical Social in Chicago. She has a private practice seeing adults,
adolescents, and children. She is a member of the governing council of
the IAPSP and is on the editorial board of the Clinical Social Work
Journal.
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