I have a story to tell you about collecting your own medical data and why it is increasingly important for us to demand and understand our own data. But I’ll cut to the punchline and then fill in the details:
@xenijardin: So, if anyone ever asks why having a copy of your medical data, and viewing it, is a good thing? You may now refer them to my #ghostpenis tale.
Did I get your attention? So what is this all about?
Xeni Jardin is a technologist and influential blogger for the geeky blog BoingBoing. She often writes about how technology, and in particular social networks, has influenced major events in society. She has written in depth about the role of Twitter in political uprisings around the MidEast and she was all over the Occupy movement before any of us were.
I follow her on Twitter – she is wickedly funny and seems to have a pulse on the tech community. But a few weeks ago, she announced on Twitter that she has breast cancer. One of the strange things about this new social networked world is the amount of sympathy that you can have for people you have never spoken to or met. Words of encouragement poured in. She wrote up her story for her blog: she was compelled to go get a mammogram after friends had been diagnosed. The powerful story of her diagnosis is worth a read.
Being a proponent of open technology and personal rights, and just outright curious, she asked for the data from one of her body scans. The lab gave it to her, in three CDs. The data was in bits and pieces, in bunches of files, and in weird formats. Xeni gave a shout out to friends on Twitter, who helped her find the tools to take a look at her scans. That is when things got weird. Here are the key tweets:
@Xeni: So I figure out how to open my bone scan data. I look. WTF. What’s that dick-shaped ghost-shadow thing—it looks like I have a penis! [1/2]
@Xeni: I agonize about it all day. Do I have a hidden penis hanging out in my leg? Can female parts or colons look dick-shaped on bone scans? 2/3
@Xeni: I call a hacker pal. “That, Xeni, is a dick.” Look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS. 3/3
At first, this might seem like a harmless mixup. But Xeni starts to wonder: Did the doctor I just spoke with, who was giving me my prognosis *read the wrong scan*? And if so, where is my data? Who has access to the images of my body? Is this an honest screw up, or evidence of gross incompetence on the hand of people I have trusted with life and death issues? These are serious issues, and issues that she would have been totally unaware of if she did not request her data.
I had something similar happen once. Once I called the doctor for some test results, and the doctor told me that my pap smear came back normal. Now this might be because my wife and I have freakishly similar names, or maybe I dont have the deepest voice. But really??? And what if my pap smear wasn’t normal? What would they have told me?
Xeni’s story is still being written, and a good writeup of the issues involved (including Xeni’s twitter feed) can be found at e-patients.net. It’s pretty riveting, and despite the underlying seriousness, even funny at times. It made me aware of a medical information movement, called Give Me My Damn Data, which advocates for patients’ access to data. I’m going to make sure to keep my eyes on it.
This is important stuff. We need more information about our health information to make informed decisions about our health care (and, as Xeni found out, to keep an eye on the system). We can get access to our purchases from Amazon going back 10 years. But try and get access to all of your medical data from that time? It’s near impossible. But imagine if we all had access to our data, we could learn so much from ourselves, and others out there. It is already starting with sites like patientslikeme.com.
There are other interesting aspects to Xeni’s story which relate to My Year of Data. By opening her private details up to the internet community and Twitter, she was able to a) get help in actually accessing and understanding the data b) get emotional support from friends, c) get legal advice about the issues involved, d) solicit suggestions on how to deal with the situation, and e) create public pressure on the caregivers involved to fix the problem (or at least get her the correct data).
So, I’ll say it again: Give Me My Damn Data.