Alright, I think we're recording here.
This message is for myself and friends or
family maybe, but hopefully just for myself.
My name is Steven Keating and I'm going into brain surgery tomorrow,
and in case I change at all I wanted to provide my
future self with my present self's thoughts.
So I've always been interested in data and
learning about things.
I used to take apart GPS devices and
strap them to my ankle and capture my daily routes and
look at that data and try to figure out what it meant.
Throughout university I would always try to participate in
lots of studies.
One, to help science, but
also because I was curious about it all.
I saw a opportunity to do a research scan, so I volunteered,
and I wanted to see what the data would be like and
I asked to see it.
And they showed me and they said,
by the way, we actually found a small abnormality here.
They didn't know what the abnormality was, but
there wasn't a huge amount of concern because I wasn't
symptomatic in any way.
So I went about my life, came down to MIT, and
then last year in the summer, in 2014, I started to smell a very
faint vinegar smell for just a few seconds a day.
And I went actually back to that original dataset of the scan and
saw where the abnormality was and
realized that's near the smell center of my brain.
I pushed to have another scan done because of the previous
findings and I really didn't think that the scan was gonna
show anything because the doctors weren't concerned,
they booked it for a month later, and
usually, the people running the scan will let you leave and
let the doctor explain the results.
But when I had the scan the person running the scan said,
you're not leaving, you need to stay in the hospital,
you have a massive tumor.
I mean, I don't necessarily know that I'm not a typical patient,
I think everyone is trying to do what they can to stay alive.
The part that I was very interested in was
trying to collect as much data as I could to make the best
decision possible.
There's nothing better than a really engaged patient.
Medicine's not easy, it's still an art and a science.
And making the right choice is complicated, not only for
the patient but also for the clinician.
And a frank and
open discourse about that makes all the difference in the world.
Patients don't always have access to the medical
information that they need to really join the conversation.
And that's what I've been sharing, which is this question.
How come as a patient we're last in line for our own data?
How come my doctors and
my university researchers can see my tumor genome and I can't?
Why are there so many barriers for
getting access to my own data?
No one really sees the problems involved with getting access
to your own data until you're in the hot seat.
In July 2008, just a week after my 29th birthday, I was
diagnosed with a slow growing but malignant brain cancer.
And immediately admitted me to the hospital and
scheduled for me to have brain surgery the following week.
And then the tumor grew back within six months.
And so, I was all screw it all, I guess I don't
have a job anymore and I'm gonna have another brain surgery and
now I'm dealing with cancer as my life and this is my job.
And maybe because I saw it as this is my job,
everything that I had in my toolbox of skill sets related to
my job I applied towards it.
And my toolbox of skill sets was I'm gonna communicate,
I'm gonna write, I'm gonna design cool graphics,
I'm gonna make little memes, I'm gonna make a video.
I'm gonna do those things.
So I write a blog called The Liz Army and it's just basically
about a person who's living with brain cancer.
As a layperson, who's gone through this cancer experience,
I definitely can tell you for
a fact that other patients are interested in connecting with
somebody like me that they can share their story who can
understand what they're going through.
And I don't expect people to go read my blog to get advice on
how they should cure their disease but it is a legitimate,
a very legitimate source of what an actual patient experiences.
I was just out there being as honest as possible to
let other people know what this experience was like.
And I think that's one of the things people appreciate most.
The first thing I think of when I think of
seeing the effect she's had on other people,
we went to a young adult, well it's basically like CancerCon.
And there was this girl Emily, and she just came up and
gave Liz the biggest hug
and was just so excited that like came up to me,
gave me a hug.
and was like, "Oh my god
I've read all about you."
And, just to see that she could have that kind of impact on people.
I think that was pretty amazing.
"Thank you so much for this beautiful blog.
My husband was diagnosed with a glioblastoma grade 4,
27 months ago and is doing great.
Well pretty much great,
aside from the whole brain cancer thing. Haha"
Your voice and that of those like you,
has been missing from this conversation.
Thanks for all you do for us.
If you were to get diagnosed with something today, and
you would wanna access the system the same way I do,
we don't all have the same tools.
It's not the same outside of my health system.
It's not the same throughout the state.
It's not the same throughout the country.
There is no one,
open, electronic medical record system that everyone knows.
So for me and cancer, there's not a road map at all.
Right now I can do many different types of
clinical trials, chemotherapies, different types of radiation.
So how do they vary in terms of liability and
risk, what is the patient experience like, right?
Maybe I don't care that this one treatment has a 1%
higher chance of survival if it involves terrible misery and
pain for the next six months of my life, right?
So how come we can't have that data in an easy to digest format
that we can share and use to make proper decisions.
I'm like, well, I have this data and this is to help the good of
mankind, and if I could just quantify self my way to a cure,
I didn't see, that being the right phrase.
So I remembered the phrase open source, and
I was like, I just wanna open source my quantified self and
share whatever I have to offer to hopefully get to
something greater that can help people diagnosed one day.
It actually helped me make medical decisions.
So being at MIT I actually had the incredible fortune of having
an amazing advisor, who helped me find a surgeon.
Basically, we put my data online and sent it around and
said, which surgical studio and
surgeon has the most experience with this specific condition.
So putting that data online, being able to share it,
I was able to actually figure out which surgeon to use.
Yeah so, this is the surgery footage.
It's ten hours.
This is a one minute version of it sped up.
Yeah, this is ten hours in one minute.
And this is them actually cutting out my brain, and
cutting out my skull.
And here's them opening up my brain tissue there.
And you can here me talking here.
I don't know if you could hear that, but
I just said this is a pretty cool experience.
I guess I started thinking about patients having access to
data sort of is a by-product of having a lot of conversations
with patients and with clinicians over the years, and
I've heard a doctors in particular talk about
the idea of actually sharing notes with patients.
You know, when I suggested it to my colleagues,
half of them thought I had lost it, and
half of them thought it was kind of a neat idea.
Open notes sort of sprang out of that parallel story from
both clinicians and patients.
It's basically the notion we should share equally.
We should be totally transparent with what we're thinking.
It's the patient's body, it's the patient's mind, and it's up
to us to understand that, for them to understand the way we're
thinking, for us to get together to share decisions,
to share plans, and that's what open notes is the beginning of.
We wanted to offer ready access to patients for those things
that we write about them.
The law gives them that access, but we've made it as difficult
as humanly possible for them to get that.
So has it been helpful for you to see your notes?
Oh, it's fantastic, it's everything's like,
yeah, that you said to me.
I said awesome.
Because sometimes I miss, you know,
with the cochlear implant that makes it difficult
sometimes to hear.
Time with me, unfortunately, is very short,
and patients will have questions or want clarification on items
that we may not have time to get through in a visit.
And so it's of vital importance in that way.
Like I said,
I don't always catch everything that she is saying to me.
And I can call her up again and then remember
what is that I wanted to discuss with her the next time I came.
And it was right there.
Patients told us that they felt much more in control of
their care, that they felt much better educated,
they felt much better prepared, and particularly thrilling,
was the fact that they were taking their medicines better.
At the end of the study with a 12 month commitment,
the doctors had the option to stop.
Not one of the participating doctors turned it off.
So if you want to play devil's advocate.
I get asked these questions a lot of the time.
Is too much information possible?
What about privacy concerns?
What about health insurance concerns?
And these are all valid questions.
Privacy in itself is a very complicated topic.
If you're healthy you worry about privacy.
If you're sick, or if you're in the emergency room,
you could give a damn about privacy.
You just want everyone to have access to everything
right away so you can be helped.
So it's a complicated dynamic.
I think it's, first of all,
important to remember that all patients are not the same.
And that we should allow a variance dependent on
a patient's choice.
If you don't wanna share anything, of course,
you don't need to share anything.
If you wanna share everything you should be able to.
As long as the patient is able to understand the liabilities
they are taking, this should go to make those decisions.
And we think full transparency is the
platform for better care,
for engaging patients much more actively in their care.
And there is no reason why it can't be a two-way
street like that.
Instead of a paternalistic view where it's all top down,
we should have bottom-up communication from the patient
side, right?
You should be able to not just receive data from the hospital,
you should be able to provide it.
You know far better than I what
happened to you in the last month.
Why shouldn't you write it down?
Why shouldn't that become part of the record?
That holds, I think, frankly greater promise for
patient engagement than just plain reading it.
That's all on the horizon.
How to get the healthcare system to acknowledge that
benefit and somehow help elevate and
empower patients to be open about it.
Being willing to share with their data for research purposes
in some capacity, they recognize that could be a benefit.
And that just opens the door for us to work together and
somehow benefit patients and
people being diagnosed with things in the future.
Why can't we have an app where you can say, yeah,
3D print my skull or donate this blood to research, and
there gonna make me author on this paper.
Instead of me having to create my website and
put it all that on there and create a more standard way.
Why can't we have a share button?
By opening the conversation about my story, there are many
people who have told me how much it has been a value to them,
whether they are an individual and they're going through this
experience and they're saying hey, that's exactly how I feel,
or thanks for giving me a heads up that this is down the line.
Or you're a caregiver going, thanks for letting me know that,
this is probably what my husband saying,
he's not sharing with me.
One of the most powerful comments I ever received is
from a parent and their child can't verbalize or
tell them what it is that's going on in their mind.
They feel like by reading my words like this maybe
what their child would say if they could speak.
There's not many benefits to having a brain tumor.
One is that I have a good excuse if I forget something.
I just say, they must have cut that part out.
I've done that many times, and another one is that you
get a very interesting perspective on life.
And so I sent out a final email to all my friends and
family right before the surgery.
I wanted to read a couple of those last few sentences from that email.
Perspective is everything, and so
change use yields the most powerful thoughts.
Family and friends are what remain when the world blurs.
Gather data as often as possible and share with the world.
It could save your life one day.
I never would have gone to the neurological folks if I didn't
have the open data from the research scan.
And then the very last sentence of that email was,
the world is a lovely, splendid, and fascinating place,
but most of all, to me it's beautifully curious.