iPad 助癌症患者掌控自己的治疗
2012-06-16 23:34:15   来源： 丁香园   作者：  评论：0 点击：

1.iPad helps IT consultant-turned-cancer patient seize control of her care
iPad 帮助了由IT顾问变为癌症患者来掌控她的健康。

2.Carrie Handley, a mobile health and health IT consultant in Waterloo, Ontario, knew that healthcare was an inefficient industry with plenty of communications shortfalls. But she didn’t realize how pervasive and frustrating the problem was until she was diagnosed with breast cancer two years ago.
Carrie Handley是加拿大安大略省滑铁卢区的一位移动医疗和健康IT顾问，她知道医疗保健是一个低效率的产业，并且通信极度缺乏。但是直到她两年前被确诊为乳腺癌时她才意识到这种问题是多么普遍和令人沮丧。

3.In fact, Handley, a former marketing executive with several medical imaging companies, was initially misdiagnosed in April 2010 because of an error in communicating the results of the mammogram.
事实上，Handley曾经是几家医学成像公司的市场部主任，最初在2010年四月检查时由于乳房X线照片结果的通讯错误而被误诊。

4.“The nurse who read [the results] over the phone to me didn’t read the entire report and said that it was negative, and so I went on my merry way,” Handley tells MobiHealthNews. Several weeks later, the hospital that did the exam called, wondering why she hadn’t returned for a follow-up appointment. “It was indeed not negative, it was positive,” Handley recalls.
Handley告诉 MobiHealthNews记者说：“护士打电话给我但是她并没有阅读整个报告，告诉我说结果是阴性的，于是我就继续快乐的生活着。”数周后，院方打电话想知道为什么她没回来做术后随访预约。Handley回想起院方说：“它确实不是阴性的，而是阳性的。”

5.After getting a late start on the treatment, Handley needed three successive surgeries.
由于开始治疗已经有点迟了， Handley需要连续进行三次手术。

6.“I got angry. I wasn’t going to become a victim or a helpless patient,” she says. But she channeled the anger into something positive. I thought, ‘You know what, I’m going to get all of my images and all of my reports because I want to understand what’s going on. I don’t want to have this to happen to me again through this process.’” Handley went to all of the facilities she had received care at and got copies of all her records – a few CDs with images, but mostly paper documents.
她 说：“我当时很生气，我不愿成为一个受害者或一位无助的病人。”但是她将愤怒转化成了积极的力量。“我原以为，你知道吗，我去取了我所有的报告和影像资料 因为我想看看这病是怎么发展的。在整个治疗过程中我不想这种情况再次发生在我身上。”Handley 去了所有她使用过的设备的地方得到了所有有关她手术记录的资料----一个存有影像资料的光盘，但是大部分都是纸质资料。

7.“Originally it started off in a binder, which, as you can imagine, became very heavy and cumbersome and awkward to carry around,” Handley says. After months of dragging the binder from appointment to appointment, she went mobile, digitizing all the information and storing it on a USB drive.
Handley 说：“最初是带着资料夹开始的，你能想象到携带那么沉重繁琐而又尴尬的的东西来回走动的样子。”经过几个月拖着资料夹进行一项又一项检查之后，她将所有的信息进行移动数字化并储存在一个U盘上。

8.“That seemed to be a really smart thing to do because it was tiny. Well, that proved to be illogical because it was easy to lose and nobody really knew what to do with it once they had it in their hands,” Handley says, echoing the experience of many who have tried USB-based personal health records.
Handley 回想起那些尝试基于USB记录个人医疗信息记录的经历时说：“这似乎是件很聪明的做法，因为它很小。然而事实证明这样的理解是不符合逻辑的，因为它很容易丢失，并且没有人真正知道当他们捡到它时该怎么处理。”

9.At one point, a physician put the USB drive in his lab coat, which then probably wound up in a laundry bin. “As I was being wheeled into surgery, I thought, well, that was really dumb of me,” Handley recalls. After she got home, she first put the records on a laptop, then her son came over with an iPad. She found the right container, one that was both portable and made the information easy to share with her doctors and nurses.
有一次，医生将U盘放在了他的白大褂兜内，洗白大褂时忘了拿出来了，很可能是因为这损坏了。她回想到：“我当时是被推着去做手术 的，我想，我当时肯定傻呼呼的。”她回到家后，第一件事就是将这些记录拷贝到笔记本电脑里，这时她儿子拿着一个iPad过来了。她意识到找到了更好的储存 器了，它既方便携带而且又能和医生护士们分享信息。

10.“By having all of that information, you become so informed and you can have a better relationship with your clinician. Yes, at first, it’s a bit difficult. They are very wary of how much information you have and if it’s even correct,” Handley says.

Handley说：“有了所有这些信息，你就会变得很清晰并且可以和临床医生有一个很好的关系。刚开始，是有点困难，因为他们很谨慎想知道你手头上到底有多少信息，并且这些信息是不是正确的。”

11.She overcame this problem early on by having caregivers verify that the information in the binder matched what was in their records. “They had some semblance of comfort that I knew what I was talking about,” Handley says. “At any one time, I typically had more information because they were limited by what information they could pull from the medical record or what they could pull up on their IT systems.”
她起初通过让护理人员确定资料夹中的这些信息和他们的手术记录相匹配解决了这个问题。Handley 说：“他们会给一些表面上的安慰，因为我知道我在说什么，任何时候我通常会比他们得到更多的信息，因为他们从医疗记录和他们的IT系统中获得的信息是有限的。”

12.Even when she was still lugging around the binder, more than a few clinicians were surprised when Handley showed up with more information than they had about her. Then those emotions went from surprise to wariness to resentment to despair, and finally to acceptance, essentially following the Kubler-Ross five stages of grief. “[Clinicians] were frustrated themselves in many instances, especially the younger ones,” Handley reports. “They would love so much to have this technology at their fingertips.”
甚至当她还拖着资料夹四处走的时候，Handley向他们展示了比 他们了解她的更多的信息时，很多临床医生感到很惊讶。他们的情绪由惊讶变为谨慎，又变为怨恨，又由怨恨变为绝望，最终表示接受了，本质上他们是经历了 Kubler-Ross的悲伤的五个阶段。Handley报告说：“许多情况下临床医生他们自己也感到很失意，尤其是年轻的那些，他们是那么的愿意用他们 的指尖来掌握技术。”

13.To Handley, mobile is the “the single greatest disruptive technology since when the Internet was introduced and revolutionized how business was being done,” and it is exactly what healthcare needs. “This is the first time ever that we’ve had a technology that’s been so pervasive in personal use that it’s a bottom-up, grass-roots movement, in my opinion,” she says. “I think that mobile is going to revolutionize how healthcare is being done because patients are becoming much more savvy.”
对于Handley来说，移动就是“自从网络的出现和商业运 作**化造就了这种简单而又最有破坏性的技术”的产物，很明显医疗保健的确需要它。她说：“我觉得，这是第一次我们拥有这项技术可以让个人使用普遍化，这 是一场由下到上，基层民众的运动。移动会将医疗保健**化因为病人也在变得越来越聪明。”

14.But the revolution certainly is not complete. Even though Manhattan Research says that 62 percent of physicians in the U.S. now use tablets – mostly iPads – the hot-selling Apple product has its limitations. For example, a multi-page pathology report might not translate well to the iPad’s 9.7-inch screen. “The screen is somewhat challenging for people to get used to,” Handley notes.
目前**还没完成，虽然Manhattan研究所提到在美国62%的内科医生使用平板电脑---大多数是 iPad（很畅销的苹果产品）有其局限性。例如，一个多页的病例报告可能不会在iPad9.7英寸的屏幕上转换得很好。Handley 注解道：“屏幕对于人们使用起来还有点不尽人意。”

15.What the rapid acceptance of mobile devices is doing, however, is forcing health IT vendors and CIOs to reevaluate their strategies and, in some cases, bloated, decades-old architecture. “I think this is an excellent opportunity to take those current systems and streamline them,” Handley says. “I think that mobile offers an incredible opportunity for rethinking many of the UIs that are out there.”
能使人们快速接受的移动设备正在研发当中，然而，这迫使医疗IT供应商和首席信息官重新评估他们的战略，在某些情 况下，如浮肿的、长达数十年的构架。Handley说：“我觉得利用当前的系统并把他们合理化是一个极好的机会。移动提供了一个难以置信的机会针对重新思 考许多已存在的用户界面。”

16.It also might finally enable the patient-empowerment movement to have a widespread effect on entrenched systems, processes and ideas that need to be shaken up.
它最终应该会使这项病人—授权的运动在根深蒂固的系统上能有一个广泛的影响，过程和思想都需要重组。

17.“The idea [of empowerment] is that people can understand what are the tools around them that can use so that they are prepared every time that they go in for that appointment or for that test or for that assessment,” Handley says. “There are tools out there, and more and more people are beginning to use them to understand that their phone or their iPad or their PlayBook can always be a part of their healthcare experience.”

Handley 说：“这个想法（关于灌输能力）就是人们能够理解他们身边使用的这些工具是干什么的，这样一来每次当他们参加预约或者做检查、评估时他们可以做好准备。现 在越来越多的人们开始使用这些工具来明白了他们的电话、iPad或者平板电脑已经成为他们医疗保健经历的一部分。”