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So first, a fantastic courage
首先我想说的是 勇气可嘉
It's great just explaining how you explain the whole thing
你能从患者的角度说明这个试验过程
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
我对知情同意方面的问题很感兴趣
because you don't even think about you have
因为对于知情同意书中的内容
all the procedures in place informed consent
你对相关的试验步骤一无所知
but if you informally, informally mention it to a relative
但如果你在非正式场合向一位亲戚提到该试验
they just take it however much you say
他们对这个项目的认识完全来自于你
They will take it, oh, this is gonna be the cure
他们会觉得 这就是一种治疗方法
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
知情同意书的目的是为了告知患者相关信息
and not get pre-expectation of it
让他们不要产生过高的希望
If you could have gone back
如果你能够回过头去
and been informed directly
直接获得全部的信息
without having the feeling that it was gonna cure you
不要认为这是一种治疗方法
without help to a little bit at the beginning of the process
这样在试验一开始的时候是不是更有帮助?
I'm sorry
对不起
Could you say that again?
能不能再重复一遍问题?
You were told first of all that this is gonna be a cure
一开始 有人告诉你这是一种治疗方法
and then you learnt from Dr. McKenna
然后你从麦克凯纳医生那里获知
that it wasn't
事实并非如此
so if you could have gone back
如果你能够回到过去
first heard that no, it's not gonna be a cure
一开始就知道这不会治好你的病
it's just a step
这只是第一步
would that help a little bit at the beginning?
那么这在试验开始时会不会更好?
Is there something that we can do better for future trials?
我们能否以此改进未来的试验?
I think the main issue was the language barrier
我认为最主要的问题在于语言障碍
My parents don't speak spectacular English
我的父母英语说得并不好
This is, you know, like I said
正如我前面提到的
all the medical jargon
这里面涉及到
that normal people don't usually understand
很多普通人不懂的专业术语
So it was just a lot of miscommunication
所以为我首次做手术的外科医生
between I guess my original neurosurgeon
和我的父母之间
who did my surgery and my parents
产生了很多的误解
I don't think it would have made a difference
如果一开始我就知道这只是第一阶段的试验
had I immediately been told that this is a Phase One trial
而且我不会从中受益
