Friday, July 20, 2007
An apology
I want to apologize to the ex-Nanshan patients to whom I've e-mailed requesting their opinion on the last post concerning ethics. In hindsight, I was most insensitive and inconsiderate in putting them in an awkward and no-win situation by asking them to either support my view or Mr. Hakim's. Mea maxima culpa.
Thursday, July 19, 2007
A question of ethics
I had an interesting discussion with Jon Hakim, director of the foreign patient services department at Beike Biotech today about ethics. On several occasions, Jon e-mailed us with requests that we did not comply with because we deemed them unethical and improper. Jon, on the other hand, thinks that these requests were reasonable. So to settle this debate, we agree to poll this audience or, more specifically, the folks who have received treatment in Nanshan. I will forward the contents of this post via e-mail to the Nanshan patients whose email addresses I have. I welcome the opinions of the readers of this post as well.
Point 1: Is it ethical for Jon to ask Richard to post the actual medical report of his visit with Dr. Perlman this past May when Richard was given the SARA (Scale for the Assessment and Rating of Ataxia) which quantified his progress after the stem cell treatment? Jon made this request after he read our May 9 post about the results of the test. We had never given Jon any indication that we would be open to sharing Richard's medical records and reports publicly nor did we ask for his input on our visit with Dr. Perlman. We received his e-mail on May 16, which reads:
Jon countered that various patients, including Kim Poor, have expressed their desire to post their medical records publicly to substantiate the effectiveness of the treatment. Since we have posted Richard's numerical SARA score in our post, Jon assumed that it was OK for him to ask us to post the actual medical report.
My problem with Jon's request not only stems from his casual treatment of such personal information but that the request came from Beike and not the Nanshan doctors. Isn't there a conflict of interest here? What would possibly justify the need for the representative of the company that sells the treatment to ask for medical data directly from the patient? Isn't this the domain of the doctors at Nanshan? In the US, medical institutions must follow specific guidelines to ensure the confidentiality of patients' medical records (HIPAA). Not only that, but there is strict protocol about who should and should not contact the patient in clinical trials so as to safeguard the impartiality of the data and experiment.
Point 2: When we returned from China, we were scheduled to see Dr. Perlman for a post-treatment consultation on May 7. As we mentioned in our May 1 post, Richard had sprained his foot in late April. We received an e-mail from Jon on May 4, asking us to consider postponing our visit with Dr. Perlman for another week because, in Jon's exact words, he wanted the doctor to see Richard on "an up day instead of a down day."
Since we live in the San Francisco Bay Area, and Dr. Perlman is at UCLA in Southern California, a last minute change in plans (2 days notice and on a weekend) translates into time and money lost in rescheduling flights and lodging. Moreover, the lead time to get an appointment to see the doctor is easily 2 to 3 months. Those who have traveled with a disabled companion understand the complicated logistics involved in not only packing for special needs but also arranging for other specific accommodations and reservations necessary to make such travel happen. A request that would disrupt such carefully laid plans should not come lightly and without good cause.
Would delaying Richard's visit a week have a significant effect on the accuracy of the SARA score? I don't know. I do know that Dr. Perlman emphasized before our China trip that it was very important for her to examine Richard as soon as we returned in order to measure his progress. Our May 7th visit was almost a month after we had left Nanshan. Kim Poor wrote in his blog that he saw Dr. Perlman as soon as he deplaned in Los Angeles from China.
Would Jon have cause to ask Kim to postpone his visit if he had known that Kim was going to see Dr. Perlman after a long and tiring plane ride? How would jet lag impact Kim's performance during Dr. Perlman's examination? If Jon had made this request to him, would Kim have complied? Are these questions even relevant since a physician is trained to take into consideration how factors like travel, a sustained ankle sprain or fatigue might affect the performance of the patient?
One thing on which Jon and I agreed is that his e-mail telling us that he would rather us not mention about the recent Wall Street Journal article here on our blog is ethically questionable. His e-mail further said that "the WSJ is evil, especially that reporter." In another e-mail, Mr. Hakim commented that "this journalist in general is well known to spin his stories anti China as much as possible and I had firsthand experience." Not only did I mention the article in the blog but I also wrote this. I believe in presenting both sides of the story and letting the reader decide.
I cannot shake the feeling that Big Brother is watching. Is Jon using our blog to monitor us? I'd like to believe that he is interested in Richard's health as a friend and not as a salesperson of stem cell treatment. However, some of his requests can be construed as too self-serving.
Simply put, we believe that our medical records are private and should only be shared on a "need to know" basis with people who are empowered and qualified to tend to our welfare. Beike should not make unsolicited suggestions and requests to the patients in matters pertaining to the patient's medical decision-making process such as the disclosure of medical reports and physician visits.
What do you think? We'd like to hear your perspective.
Point 1: Is it ethical for Jon to ask Richard to post the actual medical report of his visit with Dr. Perlman this past May when Richard was given the SARA (Scale for the Assessment and Rating of Ataxia) which quantified his progress after the stem cell treatment? Jon made this request after he read our May 9 post about the results of the test. We had never given Jon any indication that we would be open to sharing Richard's medical records and reports publicly nor did we ask for his input on our visit with Dr. Perlman. We received his e-mail on May 16, which reads:
I was wondering if you could post the medical reports that you have gotten from Dr. Perlman on your web site? It would add some credibility to it, I believe. Thank you.
We responded by saying that we would not because the information is private. We have already stated in our blog that there was measurable improvement. Why do we, the patients, need to lend "credibility" to the clinical assessment? Who is going to challenge our word? The purpose of our blog is to keep our friends and relatives abreast of Richard's progress. We are not in the business of proving or disproving that the treatment works nor are we hawking Beike's stem cell treatment.Jon countered that various patients, including Kim Poor, have expressed their desire to post their medical records publicly to substantiate the effectiveness of the treatment. Since we have posted Richard's numerical SARA score in our post, Jon assumed that it was OK for him to ask us to post the actual medical report.
My problem with Jon's request not only stems from his casual treatment of such personal information but that the request came from Beike and not the Nanshan doctors. Isn't there a conflict of interest here? What would possibly justify the need for the representative of the company that sells the treatment to ask for medical data directly from the patient? Isn't this the domain of the doctors at Nanshan? In the US, medical institutions must follow specific guidelines to ensure the confidentiality of patients' medical records (HIPAA). Not only that, but there is strict protocol about who should and should not contact the patient in clinical trials so as to safeguard the impartiality of the data and experiment.
Point 2: When we returned from China, we were scheduled to see Dr. Perlman for a post-treatment consultation on May 7. As we mentioned in our May 1 post, Richard had sprained his foot in late April. We received an e-mail from Jon on May 4, asking us to consider postponing our visit with Dr. Perlman for another week because, in Jon's exact words, he wanted the doctor to see Richard on "an up day instead of a down day."
Since we live in the San Francisco Bay Area, and Dr. Perlman is at UCLA in Southern California, a last minute change in plans (2 days notice and on a weekend) translates into time and money lost in rescheduling flights and lodging. Moreover, the lead time to get an appointment to see the doctor is easily 2 to 3 months. Those who have traveled with a disabled companion understand the complicated logistics involved in not only packing for special needs but also arranging for other specific accommodations and reservations necessary to make such travel happen. A request that would disrupt such carefully laid plans should not come lightly and without good cause.
Would delaying Richard's visit a week have a significant effect on the accuracy of the SARA score? I don't know. I do know that Dr. Perlman emphasized before our China trip that it was very important for her to examine Richard as soon as we returned in order to measure his progress. Our May 7th visit was almost a month after we had left Nanshan. Kim Poor wrote in his blog that he saw Dr. Perlman as soon as he deplaned in Los Angeles from China.
Would Jon have cause to ask Kim to postpone his visit if he had known that Kim was going to see Dr. Perlman after a long and tiring plane ride? How would jet lag impact Kim's performance during Dr. Perlman's examination? If Jon had made this request to him, would Kim have complied? Are these questions even relevant since a physician is trained to take into consideration how factors like travel, a sustained ankle sprain or fatigue might affect the performance of the patient?
One thing on which Jon and I agreed is that his e-mail telling us that he would rather us not mention about the recent Wall Street Journal article here on our blog is ethically questionable. His e-mail further said that "the WSJ is evil, especially that reporter." In another e-mail, Mr. Hakim commented that "this journalist in general is well known to spin his stories anti China as much as possible and I had firsthand experience." Not only did I mention the article in the blog but I also wrote this. I believe in presenting both sides of the story and letting the reader decide.
I cannot shake the feeling that Big Brother is watching. Is Jon using our blog to monitor us? I'd like to believe that he is interested in Richard's health as a friend and not as a salesperson of stem cell treatment. However, some of his requests can be construed as too self-serving.
Simply put, we believe that our medical records are private and should only be shared on a "need to know" basis with people who are empowered and qualified to tend to our welfare. Beike should not make unsolicited suggestions and requests to the patients in matters pertaining to the patient's medical decision-making process such as the disclosure of medical reports and physician visits.
What do you think? We'd like to hear your perspective.
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