Wednesday, December 12, 2012

A Man among Millions

Today was my last day as a Specialist Leader at Deloitte Consulting. It was a special day. I got to be the emcee for ONC's all-day session on health information exchange at their annual meeting in DC. It was a day spent with people with whom I have been working for the last three years from all over the country -- many with whom I had worked shoulder to shoulder as I traveled to more than a dozen states to help them develop and execute on their strategic and operational plans for health information exchange. 

More and more I'm being asked to facilitate meetings. I try to bring some energy to the day and add some of my creative juices to the conversation -- through a song or a story or something new. These last few weeks, I've been so busy with Kym's health and my transition from Deloitte to AMIA that I didn't have time to think about doing something special for this meeting.  

Then last week, I had the privilege of spending three days with members of our armed forces at Aberdeen Proving Grounds on the Maryland coast at an "Innovation Deep Dive" session to develop innovative strategies for targeting tobacco use among our enlisted ranks in all the branches. There I met HN Taylor Mickal, a young hospital corpsman in the Navy who also happened to be a spoken word poet. We asked him to write something for the meeting and he shared an amazing piece with us the next day called Dive Deep. His poem inspired me to try my hand at free verse -- something I'd never really approached before.

Over the last 24 hours, I wrote this piece and was honored to be able to share it with some 200 HIE warriors at the end of the day. I am so grateful to ONC leaders Claudia Williams and Erica Galvez for giving me the opportunity to share a day with people I hold in such esteem. And am even more grateful for the way they received this piece.

Thank you for doing this important work.

A Man among Millions

tick tock
check the clock
it's moving faster
in its quest 
to stop us in our tracks

can you hear it?
faster than my beating heart
thumping with anxiety
checking for the reaper
over my shoulder
who's on a bender
hell-bent on the hunt
to take down those I love

tick tock
time won't stop
or take a break or hesitate 
to cut us off at the knees
yet here we stand
for what we believe 
can make a difference 
if we only make it flow

today we stand for flow --
for what we know is essential to the health
of this thing we call a healthcare system

we stand for flow
for overcoming the inertia of standing still
pushing information out 
transforming it from solid state to liquid gold
letting it go where it needs to go
...flowing into the chasm separating us
from the quality we pay for but don't receive
...flowing so the liquid data 
cascade and echo 
making ripples of insight
that concatenate to create tsunamis of knowledge

and so we organize ourselves
into exchanges
every state and territory
building its own story 
of how to make this work
in local circumstances
taking chances with taxpayer dollars
that we could never afford 
on our own accord
trying to fix on a massive scale 
the brokenness of our system
that we in our confessed complacency 
have grown to see as normal

millions --
nameless, faceless
suffering under the burden
of a system uninspired 
to go the extra mile --
are saying enough
I have a name
I have a voice
I have a face
I take a stand

here I stand
just one example 
of a man among millions
with a family lost in this maze
with a father who died
from cancer of his phantom prostate
that had been removed twenty years before
no PSAs for twenty years
why test for something long removed?
maybe because there's a chance it's not all gone
maybe the data are all there to know the answer
of whether it would have made a difference
this one simple test

here I stand 
just one example 
of a man among millions
with a family lost in this maze
with a mother slowly losing her way
keeping the memories of her youth
but forgetting those formed an hour ago
her children 
long away from their hometown
trying to connect the dots of her care
by remote control
"help! I've fallen and I can't get up"
doesn't reach to Atlanta or DC
so we rely on old technology of phone and fax
which isn't up to the task
as she rides 
from assisted living
to hospital
to rehab
and back again
while her medical records struggle 
to keep up the pace

here I stand
just one example 
of a man among millions
with a family lost in this maze
with a young son who enjoys good health
but has already faced the surgeon's scalpel 
at an age too young for his memory to recall
exactly why he has that scar on his back
or how his kidneys lack the full capacity
others take for granted
how will he know 
when he comes of age
what this means for him
his records passed down
from his elders
like an oral history
told around a campfire 
after a hunt for mastodons

here I stand
just one example 
of a man among millions
with a family lost in this maze
with a wife who bravely faces
cancer number three
in thirty years
who alone carries the burden
of coordinating care 
among the dozens and dozens
of providers who focus on
the particular part of her they understand
who alone carries the records
from place to place
from year to year
from diagnosis to diagnosis
hoping she can keep it all straight
so at the very least they do no harm

here I stand
one of the lucky ones
a man of means
with coverage
with knowledge
with friends
who stands helpless
to make the system work
for those who are the world for him

here I stand
in a room of my heroes
who possess amazing superpowers
to bend maze corners
into straight corridors
and change the flow
from a trickle 
to a torrent

I don't presume to know what drives you
what compels you in the morning to forego
another fifteen minutes sleep
and return to the battle
to do the heavy lifting
to add another line of code
to write another line of policy
to sign up one more to join the exchange
to solve one more problem
to make one more connection
to make it flow

but if you need a story to motivate
to steel your resolve to press on
mine is here and free for the taking

still better
forget my story
and tell your own
shout it from the rooftops
or whisper it only to yourself
but keep that picture
sharply focused in your mind
to give you the inspiration
to do the work
so we all can be 
one among the millions
whose information flows

Sunday, December 09, 2012

Decisions, Decisions

Clearly, I am not a dedicated blogger. After sharing a string of posts on Kym's cancer journey, six weeks came and went without a peep from me or a peck on the keyboard for this blog. But those six weeks have been anything but mundane. Kym is recovering beautifully from her initial surgery and is feeling great. She continues to focus on the full-time job of deciding on and preparing for her treatment path.

Her path has not been straightforward. This is more because we are in the enviable position of having options -- something we know many who face a cancer diagnosis don't get to enjoy. The findings from Kym's pathology reports and the additional biomarker tests have been, for the most part, very encouraging. She has Stage IB ductal cell carcinoma, which means that the cancer, though locally invasive, has not spread beyond her breast tissue. Her sentinel node biopsy showed only microscopic cancer and is considered node negative for staging purposes.

Chemotherapy would be a standard option; a few oncologists would recommend watchful waiting at this point. Kym has been working with Donnie Yance, a master herbalist in Oregon (, to develop a botanically based protocol to optimize her health and create a cellular environment that is not receptive to tumor growth. After many discussions and consults, a great deal of personal research, and much prayer, she has decided to postpone chemotherapy.

Just a sample of the biomarker studies Kym obtained on her cancer profile

I've thought about what I would say in this post for quite a while and it's frankly gotten no easier with time. While I have some misgivings about Kym's decision, I am also completely supportive of her decision. There are a couple of reasons for why I feel as I do. The rationale for her decision is well reasoned, so I don't think Kym is just eschewing traditional medicine because she is being naive or ill-informed. On the contrary, she has maintained an openness to whatever options make the most sense for her. At the same time, Kym is not just accepting whatever the doctor says; she is the personification of an engaged patient. And she has long understood the benefits of complementary approaches to health through her 30-year experience as a cancer survivor and her training as a certified holistic nutrition consultant.

I've attended or have listened in on as many of Kym's consults as possible. She's received excellent if not sometimes conflicting advice. Donnie's knowledge of tumor markers, current research on treatment protocols, and the effects of botanicals on the human body is truly impressive. I cannot find fault in the level of scholarly research he has personally done to arrive at his recommendations. In all of this, I feel very much the novice and, like most people, have to rely on the recommendations of experts and trust that they are bringing unbiased perspective to the table.

Still, I know my own comfort zone. I trust allopathic medicine because it is what I know. I also know its limitations and that it is subject to its own biases. How many promising therapies have come and gone when the initial clinical evidence prompting FDA approval prove not as demonstrable in everyday clinical practice? And how many times have we later learned that commercial interests shaped the initial evidence?

So I remain uncertain of which path makes the most sense. If it were me, I would have gone the "traditional" route and subjected myself to a year of chemotherapy, with all of the attendant challenges. But it's not me. It's Kym. And that's the second reason I support her decision, because the decision is ultimately hers to make. In truth it's the only important reason for my support.

Kym has also decided to go ahead with a mastectomy on the currently unaffected side. She is among a growing number of women who are choosing this option of a prophylactic mastectomy -- removing the breast tissue before there is evidence of disease. Most oncologists will tell you that the evidence for such a decision is not clear. We've also seen them quickly agree that it is a reasonable choice for Kym because of the mantle radiation she received in the past, making her risks for another breast tumor in the future even higher. So just after Christmas, Kym will have her second surgery.

More Decisions

This whole experience has given us reason to pause and consider some broader issues of how we are living our lives and how much time we are carving out for work versus family. I have been on a fairly high-intensity career track for the last dozen years -- first at Pfizer, then in management consulting at BearingPoint and Deloitte. My four years at Deloitte have been fascinating and, for the most part, very enjoyable. But it is an intense and somewhat relentless place. Performance expectations are high, as are the rewards.

Back in September, the day after we learned about Kym's diagnosis, I was on a call with Jonathan Grau from the American Medical Informatics Association -- my professional association -- about an industry survey on health informatics we were jointly publishing. On the call, I shared my news and Jonathan shared his -- he was leaving AMIA. Minutes after the call, he texted me: You should seriously think about taking my job.

Then the day after that I got a call from a good friend with whom I had been considering partnering for many years. He indicated he was ready to take the plunge and have me join his small but growing band of folks. Within a couple of weeks, I was staring at two unsolicited job offers.

Three, really, as Deloitte leadership had made it clear that they would be willing to work with me on whatever arrangement made sense for me as Kym went through treatment: work from home, focus on business development or eminence -- whatever would work best. But Deloitte is investing heavily in informatics, having recently acquired Recombinant Data, and is building a formidable federal strategy practice. I know myself and the way the firm works; it would be extremely hard to keep myself from being pulled into the middle of these important endeavors.

In the end, the decision was pretty simple. I needed more balance and a more focused career for a season. Staying at Deloitte, I would be like a kid in a candy shop who's supposed to stay on a strict, low-carb diet; and my friend's offer was great, but it was also in the consulting realm, which wouldn't really change the dynamic of what I do for a living.

So on 12/12/12, I will start my first day as VP of Corporate Relations and Business Development at AMIA. AMIA has over 4,000 members, but only 15 (and as of next week, 16) staff members. It's a role I can get my head around and something I feel comfortable doing. No doubt, there will be pressures of a different kind in this role. The AMIA board has high expectations for the growth of the organization and rightly so. I personally believe that this is the time for the informatics profession to experience a real transformation.

Our need for good data, information flow and better clinical decision support is real and more critical than ever. That information needs to flow not just to researchers and clinicians, but to the people receiving treatment and to their loved ones and caregivers who are invested in their health. I feel that need on a very personal level every day.