Tweet
This is the letter he wrote to her:
To the XXXXXXX Medical Center Patient's Advocate,
I would like to have the policies and procedures for maintaining patient's records at the Life Skills Clinic reviewed and changed. Currently, mental health diagnoses are entered into a computer system that is accessible hospital wide by anyone with access to patient records. I believe this policy is detrimental to a patient's mental health and an unnecessary invasion of a patient's privacy. I would like to have the Life Skills records restricted (or get patient approval) so that only fully trained mental health professionals can routinely access them. As a minimum, I would like to have my wife's Life Skills records restricted.
I would like to relate a couple of examples that hopefully illustrate the damage that open access to these types of records may cause. My wife suffers from a chronic medical condition known as interstitial cystitis. One of the effects of this disease is chronic bladder pain. She has been struggling with this disease for six years. To aide my wife in dealing with this disease, her doctor (Dr. T.) referred her to Life Skills. She was diagnosed with Post Traumatic Stress Disorder and additionally with 307.89 - Pain Disorder Associated with Both Psychological Factors and a General Medical Condition (incidentally a diagnosis we disagree upon). These diagnoses were entered into her computerized permanent medical records.
Within a month of receiving the PTSD diagnosis, she was being examined for possible breast cancer (lumpectomy) when her surgical doctor very unexpectedly asked her about the cause of her PTSD. Childhood abuse is not something you want brought up every time you visit the doctor. My wife was caught totally off guard and found the experience quite distressing. I cannot imagine what motivated this doctor to bring it up, but it wouldn't have been an issue if my wife's mental health records were restricted.
Another of her doctors told her that her 307.89 diagnosis meant to him that her pain symptoms were essentially psychosomatic. You may be unaware of this, but IC for many years was considered a hysterical disease of women and only recently been accepted as a "true" disease. Naturally, my wife is very sensitive to anyone thinking her disease is in her head, especially one who may be involved in treating her symptoms. When consulted about this, the psychologist that gave her the diagnosis agreed that she has a medical basis for her pain and that the other doctor did not fully understand the meaning of 307.89. This is another example of why only fully trained mental health persons should have access.
HIPAA laws are so restrictive that no doctor will discuss my own wife's medical condition and diagnosis without her presence, yet very sensitive results are put into general computer system with open access. I understand the idea of a "holistic" approach to patient care, but this is an area where we should be on the side of caution and privacy.
I have discussed this matter with personnel at Life Skills. They did not feel they had either the authority or ability to make any changes.
###############################################
Anyway, what happened is, they showed my husband the Air Force Regulation that required the mental health information to be accessible via computer to all doctors/nurses/technicians DoD-wide. So they refused to alter the diagnosis, or to restrict access to it.
They had a meeting with the head of medical ethics, the dep cdr of the hospital (with the commander being briefed afterwards), and with the hospital lawyer.
The lawyer insisted that HIPAA laws were being obeyed and that nothing illegal was going on. (I have filed a HIPAA violation complaint with the appropriate government agency, which I hope might still be investigated. At least I know I did the right thing for other patients by raising this as a question, even if I am wrong about it being a HIPAA violation.)
So what they decided to do was this (with our permission, which we gave.) They are going to block out names so that no one in the hospital will "know" it is us/me. And then at the monthly training session where ALL docs in the hospital must attend, no exceptions, they are going to read the letter and discuss sensitivity to this issue. Teaching doctors to basically not act like jerks when it comes to these diagnoses. They will also raise the issue at an annual meeting of hospital commanders, so this issue can be discussed on an Air Force-wide basis and ideas can be generated as to whether or not changes should be made to better protect patients.
So, that was better than nothing at least. I count it as something of a victory. I hope that this will mean there will be less trauma for other patients who have mental health diagnoses entered into the computer system.
So I guess I'm pretty much satisfied. I would have preferred for that diagnosis to be stricken from my records, since I don't agree that my IC pain is all in my head, but obviously I am not going to get my wish granted on that, so I will take this instead.
Blessings,
and thank you all again for being so supportive. It horrifies me to know how many of you have also been told "it's all in your head" and I'm thankful that there is one place in the world where I can come, where people really do understand how bad it feels to be told that.
Lori
To the XXXXXXX Medical Center Patient's Advocate,
I would like to have the policies and procedures for maintaining patient's records at the Life Skills Clinic reviewed and changed. Currently, mental health diagnoses are entered into a computer system that is accessible hospital wide by anyone with access to patient records. I believe this policy is detrimental to a patient's mental health and an unnecessary invasion of a patient's privacy. I would like to have the Life Skills records restricted (or get patient approval) so that only fully trained mental health professionals can routinely access them. As a minimum, I would like to have my wife's Life Skills records restricted.
I would like to relate a couple of examples that hopefully illustrate the damage that open access to these types of records may cause. My wife suffers from a chronic medical condition known as interstitial cystitis. One of the effects of this disease is chronic bladder pain. She has been struggling with this disease for six years. To aide my wife in dealing with this disease, her doctor (Dr. T.) referred her to Life Skills. She was diagnosed with Post Traumatic Stress Disorder and additionally with 307.89 - Pain Disorder Associated with Both Psychological Factors and a General Medical Condition (incidentally a diagnosis we disagree upon). These diagnoses were entered into her computerized permanent medical records.
Within a month of receiving the PTSD diagnosis, she was being examined for possible breast cancer (lumpectomy) when her surgical doctor very unexpectedly asked her about the cause of her PTSD. Childhood abuse is not something you want brought up every time you visit the doctor. My wife was caught totally off guard and found the experience quite distressing. I cannot imagine what motivated this doctor to bring it up, but it wouldn't have been an issue if my wife's mental health records were restricted.
Another of her doctors told her that her 307.89 diagnosis meant to him that her pain symptoms were essentially psychosomatic. You may be unaware of this, but IC for many years was considered a hysterical disease of women and only recently been accepted as a "true" disease. Naturally, my wife is very sensitive to anyone thinking her disease is in her head, especially one who may be involved in treating her symptoms. When consulted about this, the psychologist that gave her the diagnosis agreed that she has a medical basis for her pain and that the other doctor did not fully understand the meaning of 307.89. This is another example of why only fully trained mental health persons should have access.
HIPAA laws are so restrictive that no doctor will discuss my own wife's medical condition and diagnosis without her presence, yet very sensitive results are put into general computer system with open access. I understand the idea of a "holistic" approach to patient care, but this is an area where we should be on the side of caution and privacy.
I have discussed this matter with personnel at Life Skills. They did not feel they had either the authority or ability to make any changes.
###############################################
Anyway, what happened is, they showed my husband the Air Force Regulation that required the mental health information to be accessible via computer to all doctors/nurses/technicians DoD-wide. So they refused to alter the diagnosis, or to restrict access to it.
They had a meeting with the head of medical ethics, the dep cdr of the hospital (with the commander being briefed afterwards), and with the hospital lawyer.
The lawyer insisted that HIPAA laws were being obeyed and that nothing illegal was going on. (I have filed a HIPAA violation complaint with the appropriate government agency, which I hope might still be investigated. At least I know I did the right thing for other patients by raising this as a question, even if I am wrong about it being a HIPAA violation.)
So what they decided to do was this (with our permission, which we gave.) They are going to block out names so that no one in the hospital will "know" it is us/me. And then at the monthly training session where ALL docs in the hospital must attend, no exceptions, they are going to read the letter and discuss sensitivity to this issue. Teaching doctors to basically not act like jerks when it comes to these diagnoses. They will also raise the issue at an annual meeting of hospital commanders, so this issue can be discussed on an Air Force-wide basis and ideas can be generated as to whether or not changes should be made to better protect patients.
So, that was better than nothing at least. I count it as something of a victory. I hope that this will mean there will be less trauma for other patients who have mental health diagnoses entered into the computer system.
So I guess I'm pretty much satisfied. I would have preferred for that diagnosis to be stricken from my records, since I don't agree that my IC pain is all in my head, but obviously I am not going to get my wish granted on that, so I will take this instead.
Blessings,
and thank you all again for being so supportive. It horrifies me to know how many of you have also been told "it's all in your head" and I'm thankful that there is one place in the world where I can come, where people really do understand how bad it feels to be told that.
Lori
:woohoo:
!!!
Comment