Thursday, April 23, 2009

Privacy and Anonymous

I have to confess that I'm annoyed by the ongoing, relentless, uninformed comments posted by Anonymous (of course) about our new book, It's Too Hard to Be Sick In America. Anonymous has a problem with me telling the stories of patients without permission. Anonymous doesn't know for a fact that I don't have permission. And although I have told Anonymous over and over again that I have changed EVERY name in every story, and been very careful to avoid facts that might identify the patient, Anonymous continues to accuse me of writing stories in which "folks are being named." THIS IS JUST PLAIN FALSE. The only real names that are used are mine, Mike McCready's, and one patient who actually asked me to use her real name, so I did.

I'm posting this to reassure people because Anonymous keeps getting the facts wrong. Throughout It's Too Hard to be Sick in America, I have made very careful and deliberate efforts to change names, and even avoided identifying the state patients live in for the most part, and changed or omitted other facts that would identify the patients. Nobody but me and the patient would recognize the story. Real names are not used. States of residence are omitted almost entirely. Facts are changed to disguise any element that I thought might identify anybody.

The privacy of the people whose stories are told has been and will be completely protected.

I told patients' stories in Friday Tired. They thanked me. I use sample appeal letters and other documents in the appendices to the Know Your Rights Handbook, which has sold thousands of copies. I eliminated all patient names but used the rest of their "cases," and I have never gotten a single complaint. Lawyers and doctors talk about their clients and patients all the time, and as long as identities are not disclosed, it is perfectly ethical and professional. Indeed, how to we teach, how do we illustrate, without using people's stories?
How many stories have I told on this blog without a single person raising an objection?

Someone else posted a comment that I believe was absolutely right. Anonymous is missing the point of this publication. Instead of reading the stories, he/she is harping on a point to which there is no merit. The point of this book is to illustrate the obstacles facing the chronically ill so that policy makers will have an accurate understanding of chronic illness when they think about health care reform and chronic disease management. The point is made most powerfully by telling real stories of real people, in my opinion, while always protecting their privacy.

And, in addition, how many of us who are chronically ill have run up against people who simply don't "get it?" Next time that happens, you can hand them a copy of this book, because when you read these stories, you can't help but get what it's like to be one of us. Again, stories are the most powerful way of making this point.

I don't understand Anonymous's motives for trying to discredit a FREE publication that is aimed at doing a public service to all of the chronically ill. Nobody whose story is told can be identified. Anonymous doesn't claim to be someone whose story was told. He/she doesn't even seem to have read the stories. I realize that, when you put yourself out in the public domain, you have to accept the fact that there will be people who don't like you, and who dog your every move. But why this important publication on this important issue? Why does Anonymous want to distract us from the real point of this book? Why create a fictitious issue where one doesn't exist?

I worked very hard for a long time on this publication. I begged for money to cover printing costs so that I wouldn't have to sell it. I wrote it using the patients' initials, and then changed all of the initials to completely false names that are nowhere near the real names. I have been very careful about patient privacy, while giving some meaning to the trials and tribulations of these patients by using those experiences to teach. It's how I feel about the work I do -- it makes my disease into something useful, as I use my experience as a patient to inform the work I do on behalf of other patients. Now, these patients' burdens are being used to enlighten others. Don't you think those patients are and will be proud that something good came out of their horrors?

I believe that I have been entirely ethical and professional about preparing this publication. Anonymous disagrees. I can live with that. Anonymous has made his/her point repeatedly. I have answered repeatedly, correcting the FALSE statement that "folks are being named." I am confident that I have done nothing wrong. And I am confident that these stories needed to be told. And, alas, I'm confident that nothing I say will convince Anonymous, so I won't be addressing any further comments left by this person. This is my final word on this subject.

You're all welcome to read the book -- or not. You can disagree with me -- or not. But can't we focus on something that really matters? What matters is that people are going through complete hell, and they did nothing to deserve it other than be sick. That's shameful. It should not happen in America. In light of the fact that I have taken such pains to protect patient privacy, isn't the point of this publication more important than this baseless accusation?

Enough said. Again, I will not be responding to any more of Anonymous's comments. I promise Advocacy for Patients' clients that their privacy is closely guarded. It's why we don't use volunteers, why medical records never leave the office, why we comply with HIPAA even though technically, legally, we are not a "covered entity." Patient privacy is paramount. This book does not violate that principle. Jennifer

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