評論
打印
So first, a fantastic courage
首先我想說的是 勇氣可嘉
It's great just explaining how you explain the whole thing
你能從患者的角度說明這個試驗過程
was fantastic here from the patient's perspective
本身就非常了不起
I'm also interested in the informed consent aspect
我對知情同意方面的問題很感興趣
because you don't even think about you have
因為對于知情同意書中的內容
all the procedures in place informed consent
你對相關的試驗步驟一無所知
but if you informally, informally mention it to a relative
但如果你在非正式場合向一位親戚提到該試驗
they just take it however much you say
他們對這個項目的認識完全來自于你
They will take it, oh, this is gonna be the cure
他們會覺得 這就是一種治療方法
So I think that's less maybe
也可能不一定
form of informed consent is to be set up to inform the patient
知情同意書的目的是為了告知患者相關信息
and not get pre-expectation of it
讓他們不要產生過高的希望
If you could have gone back
如果你能夠回過頭去
and been informed directly
直接獲得全部的信息
without having the feeling that it was gonna cure you
不要認為這是一種治療方法
without help to a little bit at the beginning of the process
這樣在試驗一開始的時候是不是更有幫助?
I'm sorry
對不起
Could you say that again?
能不能再重復一遍問題?
You were told first of all that this is gonna be a cure
一開始 有人告訴你這是一種治療方法
and then you learnt from Dr. McKenna
然后你從麥克凱納醫生那里獲知
that it wasn't
事實并非如此
so if you could have gone back
如果你能夠回到過去
first heard that no, it's not gonna be a cure
一開始就知道這不會治好你的病
it's just a step
這只是第一步
would that help a little bit at the beginning?
那么這在試驗開始時會不會更好?
Is there something that we can do better for future trials?
我們能否以此改進未來的試驗?
I think the main issue was the language barrier
我認為最主要的問題在于語言障礙
My parents don't speak spectacular English
我的父母英語說得并不好
This is, you know, like I said
正如我前面提到的
all the medical jargon
這里面涉及到
that normal people don't usually understand
很多普通人不懂的專業術語
So it was just a lot of miscommunication
所以為我首次做手術的外科醫生
between I guess my original neurosurgeon
和我的父母之間
who did my surgery and my parents
產生了很多的誤解
I don't think it would have made a difference
如果一開始我就知道這只是第一階段的試驗
had I immediately been told that this is a Phase One trial
而且我不會從中受益
