Saturday, August 15, 2015

Flow - A Spoken Word Piece about Health Information Exchange




On Monday, August 17th, 2015 I begin a new chapter as Program Director for the new Integrated Care Network initiative at CRISP, Maryland's health information exchange. We will be providing data to healthcare providers to enhance their care coordination efforts and providing additional care coordination tools to some of those providers who don't already have these capabilities in place.

To mark the transition, I decided to make a video of this spoken word piece I wrote in 2012 (originally entitled "A Man among Millions") for my last day consulting for the Office of the National Coordinator for Health IT while I was working at Deloitte Consulting. This piece explains why I am so passionate about making health information exchange work for all of us.

I am grateful for the opportunity to make a difference with an amazing team of collaborators and look forward to providing updates on our progress over the coming months and years.

Flow

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

tick tock
can you hear it?
faster than my beating heart
thumping with anxiety
checking over my shoulder
for the reaper
he's on a bender
hell-bent on the hunt
to sniff down and snuff out
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 that separates us
from the quality we pay for but don't receive
flowing so that the liquid data
cascade and echo
creating ripples of insight
that concatenate to engulf us
in tsunamis of knowledge

and so we implement electronic health records
organizing into exchanges
to make flow a reality
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 answer is there
hidden among the data
to know the answer to the question
of whether it would have made a difference
a life or death 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 misplacing 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 traverse time zones
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 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 four
in thirty-two 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
with coverage
with knowledge
with friends
who stands helpless
to make the system work
for those who are the world to him

here I stand
speaking to my heroes
who possess amazing superpowers
to bend maze corners
into straight corridors
and transform the flow
from a trickle
to a torrent

I don't presume to know what drives you
what compels you 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 create another decision support rule
to make one more connection
to solve one more problem
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

better still
forget my story
and tell your own
shout it from the rooftops
or whisper it only to yourself
but keep that image
sharply focused in your mind
to give you the inspiration
to do the work
so we all can be
one among the millions
who survive
no, who thrive
who sail

in the flow

(c)2015 Ross D. Martin, MD, MHA
www.rossmartinmd.com
www.ACMImimi.org
www.crisphealth.org

Friday, August 14, 2015

How to Quit Your Job

"Take this job and shove it."

Sure, it makes a catchy hook for a song and maybe helps us get through some of the rougher work days as we imagine ourselves boldly walking into the boss's office, doling out these choice words, and walking out.

But however satisfying in the moment or the imagination, quitting in a huff certainly isn't the most elegant solution for dealing with a challenging job situation. Not only does it hurt your employer (assuming you were meaningfully contributing to your organization's mission), it can also contribute to your reputation as a quitter or a hothead--or worse.

More typical is the quiet job search where you put out feelers while still employed. Then, after securing a new role, you give notice to your current employer, which can leave them scrambling to fill the gap you will leave after a traditional two-week notice.

I just ended a job using neither of those approaches and it worked out more perfectly than I could have hoped. My departure was such a success that more than one colleague suggested I write about it. Writing about quitting doesn't sound like much fun, but I'll do my best to provide some perspective on where and how you can think about making a carefully crafted transition that leaves both you and your employer in a better position.

I will say from the outset, that the story might have turned out very differently without the amazing partnership and leadership demonstrated by our current President and CEO, Dr. Doug Fridsma, and AMIA's longtime COO, Karen Greenwood. Together, we built a relationship based on on trust and transparency. Without those two essential elements, I would never recommend taking this particular path. But if you can build that trust and maintain clear, bidirectional communications along the way, I believe your chances are high for achieving an outcome that is beneficial for both your career and the organization you are leaving.

The specific circumstances leading up to my decision to seek a new role are better told over a pint. The salient issue was that I had been managing two distinct roles at AMIA, which had been my professional home since 1997 and my employer since December of 2012. As VP of Policy and Development, I was responsible for AMIA's public policy efforts, shaping both the legislative and regulatory landscapes as they related to informatics. I was also responsible for AMIA's corporate membership program. Both of these jobs had been separate roles until about two years ago when our VP of Public Policy resigned. Rather than add another staff member, we decided to combine this role with my corporate relations and business development responsibilities. 

This dual role arrangement had always been challenging, requiring a significant amount of give and take between the two competing interests of expanding AMIA's influence and growing AMIA's bottom line. But with 2015 came a Republican-led legislature bent on introducing new legislation around Health IT, precision medicine, electronic health records, and health information exchange. There was no way I would be able to deliver on both roles effectively. Something had to give. AMIA is a small but mighty professional association, so we couldn't simply add more layers of staff without compromising our budget.

After looking at the situation from many angles, in the fall of 2014 I made a recommendation to Doug (who had just joined AMIA as our new President and CEO) and Karen: split my job back into two distinct roles of policy and business development.

There is an obvious snag in this proposal: I couldn't split myself in two. So my choices were to stay and take one of the two jobs (along with a significant cut in salary) or get out of the way (i.e., leave AMIA) so we could rightsize the roles and responsibilities. I added another point to my proposal and asked that AMIA give me the 2015 calendar year to find a new job, during which time I would keep them informed about my prospects so they could better plan the timing of my replacements and so I would have a long enough runway to do a careful search for a new opportunity. 

The more typical approach of the quiet search was less appealing for a couple of reasons: first, there was a high likelihood that wherever I landed, it would be with an organization that is already a part of AMIA--perhaps even one of our existing corporate members. This dynamic would make a search awkward at best and toxic at worst. Second, and perhaps more importantly, dropping out of these two mission-critical roles for AMIA at such an important time and with little notice would put the organization in a challenging position. I'm not so arrogant as to believe that AMIA would have failed without me, but it would have put a real dent in the progress we made in building a strong corporate membership program and we would have lost some very tangible opportunities to shape the legislative and regulatory landscape. 

Doug took my initial proposal and, as he learned more about the organization and our needs, he added to it. Doug and Karen worked together to develop a new proposed structure for both departments. His first hire was a new VP of Public Policy, Jeff Smith, who as luck would have it, became available from CHIME with deep HIT policy experience and a strong reputation on the Hill and with the media as a strong thinker and analyst. I could spend many more paragraphs describing how Jeff was the right person at the right time. Suffice it to say, he hit the ground running. On his first day, we got a call from the Senate HELP staff about our EHR 2020 paper. Seventeen days later, our incoming Board Chair was testifying before the full Committee at their first hearing on the future of electronic health records. Jeff's been going gangbusters ever since.

I had been keeping my eyes and ears open for opportunities and had started a couple of dialogues, but wanted to wait until June 1st to start my search in earnest. The timing was better for AMIA as it fit better into our natural business cycle, plus it gave Doug time to settle in, get his own sense of what AMIA needed in the roles I would be handing off, and put his own design on the process. I kept both Doug and Karen informed about my progress each week and tried to provide some relative odds about how close to a new employment agreement I was. We looked at some contingency plans about my serving as a part-time consultant to AMIA in the event that they didn't fill the roles as quickly as they hoped, giving us maximum flexibility to move through the transition. This arrangement also gave me the opportunity to consider small-firm or independent consulting, with AMIA serving as an anchor client for the first months of my move. 

It turned out that this transition option was not really needed. A new opportunity with CRISP, Maryland's health information exchange, emerged and received state funding sooner than anticipated. During the interview process, I shared my arrangement with AMIA and included some contingency planning for helping AMIA on a very part-time basis as part of our negotiations. Like most hiring employers, they were eager to have me start sooner than later, but they expressed appreciation for the commitment I was showing to my current employer; I believe this ultimately helped rather than hurt my candidacy. I accepted a role as Program Director of CRISP's newly minted Integrated Care Network infrastructure project. I'll say more about my new job in a future post.

Around this same time, AMIA made its second hire. Jenn Novesky joined the AMIA staff as Director of Corporate Relations on August 3rd, 2015. My last day at AMIA was the following Monday, which gave me a full week to onboard Jenn in her new and admittedly complex role of selling and fulfilling corporate memberships for AMIA using a took I built that we affectionately call The Matrix.

The Bottom Line

Many people measure leadership and success by what they accomplish in a role. I'm proud to say that I grew AMIA's corporate membership program in each of the three years for which I was responsible. And I am proud of the work we did to advance AMIA's policy interests. But I think a better marker of success is how you leave an organization and what happens after you're gone.

So I am even more proud of how I am leaving AMIA, with solid talent in place who are well equipped to effectively do the jobs they have been given and the have room to make these jobs their own. And I am deeply grateful for Doug's and Karen's leadership and friendship as we managed this transition as a team--with transparency, trust and mutual respect. Together, we took a difficult situation and made it work to mutual advantage. 

As I said at the beginning, there are many job situations where this type of transition is simply not possible. But I'm glad to share an example of how it can work when you build healthy and respectful relationships with your leaders, then build on that trust to create a strategic and flexible framework that makes room for a more optimal solution.

Have you had an experience with leaving a job that turned out well? Do you have other suggestions about how to approach a job transition when you're in a critical role? Leave a comment and tell about it!

Saturday, May 16, 2015

Maybe Not the End of the World as We Know It

My wife and son were on their way home from a school outing to Hershey Park. So I had an evening to myself and OD'd on Big Bang Theory on TiVo. My favorite part is reading Chuck Lorre's vanity cards at the end. He is my hero -- the guy I thought I would be someday when my geek self and my creative self made babies that ended up in film or on TV. 

So his vanity cards at the end of every show are little missives to me and the other wannabe geeks who are at least content to appreciate what he's done. 

I've been waiting for his 500th card, imagining that it would be something special. I think it ended up on Mom - a show I don't watch. So I looked it up on his website. Sure enough, it was cool. But it ended up with some matrix math I didn't get. So I Googled it. Bam! Someone on Reddit broke it down. It solved to 500 for his 500th card. 

I love Google. I love Big Bang Theory. And my family just came home. I love them too. Some days, I think the world just might make it after all. 

http://www.chucklorre.com/index-bbt.php?p=500

Friday, March 06, 2015

A Family Apart - Book Review of Craig Steffen's Poignant Memoir

A Family Apart - Sleuthing the Mysteries of Abandonment, Adoption and DNAA Family Apart - Sleuthing the Mysteries of Abandonment, Adoption and DNA by Craig A. Steffen
My rating: 5 of 5 stars

First, a disclaimer: Craig A. Steffen is a decades-long friend, a former roommate, a former boss, and former client. My goal here is to convince you that my five-star review is unsullied by my longtime association with Craig.

Second, read to the end to learn how to get a free* copy of the book on me.

A Family Apart - Sleuthing the Mysteries of Abandonment, Adoption and DNA is a fascinating ride into the methodical quest of an orphan to uncover the truth about his origins. Even more, this book delves into the questions that come from being uncertain about the realities of personal history - what is true and what is convenient folklore passing for truth in order to protect reputations or preserve innocence.

Craig Steffen's story and the way he unravels it is compelling from the start when he recounts his earliest memories of his holding pin - the orphanage where he spent two years after the disappearance of his mother who, as all would tell him for years, ran off with the family car never to be seen again. By the time the last pages are turned, Craig has taken you on a journey that includes sleuthing his true ancestry and learning of his sometimes tragic backstory.

To say much more about the details would be to give too much away and spoil the read. So instead, I'll tell you what I like about the way the story is told:

  • Any memoir - especially those concerning childhood memories - can be loose versions of the truth at best and pure fiction at worst. Craig frames his story with as much evidence as he can dig up. Then he adds some creatively imagined scenes from the perspective of other characters that fill in some gaps with what are likely scenarios. You get that he's taken some license, but see the truth in the story.
  • I appreciate the way Craig describes his methodical search for truth and his tenacious pursuit of leads. He conveys all of his research with enough detail that you get the essence and appreciate the work it took without it becoming mind-numbing. On the contrary, I found myself pulled into the pursuit and turning pages to get to the result.
  • This is an honest book about the search for roots and the emotional impact of both being rootless and discovering those roots. I'm fairly incurious about my own roots - perhaps because they are not mysterious. Yet Craig brought me into his confused and troubled inner thoughts and made me feel that sense of abandonment and loss in a profound way - all without making me feel as though he were playing for pity or needlessly tugging at my heartstrings.
  • This is a well-written book. I'm a persnickety editor as my friends and coworkers can readily attest. For a self-published work, it is well edited and artfully constructed. Craig could have gone in many directions in how he conveyed the story and I think he struck the right balance between thoroughness and elegance.
Still not convinced that this is a read for you? Here's how you can try it on for size at no cost to you: I have sent Craig a check for three copies of the book plus shipping. Go to his website at www.craigasteffen.com and contact Craig to ask for one of Ross's copies of the book. If one is still available, he will send it to you gratis. Here's the deal: you have to read it. If you love it, send Craig a check for $30 so he can send another copy out for free to someone else who needs to read it - you know, pay it forward. This is a book that others need to read, which is why I'm making this offer. I'll be interested to learn how long the chain can go. if there's no way you can afford to buy the book, then pass your copy along to someone else and let Craig know you've done so.


View all my reviews

Sunday, October 13, 2013

The Boy at the GateThe Boy at the Gate by Danny Ellis
My rating: 5 of 5 stars

The Boy at the Gate is a deeply personal memoir. It speaks to the lost child in every soul by channeling a boy's confused, innocent, desperate voice to convey the story, then weaving an adult's wisdom and perspective into the book to fill in the gaps and contemplate the life lessons that can be drawn from such a harrowing childhood.

This review is not without bias: I consider its author, Danny Ellis, a friend--mostly because we share a common experience of having our personal journeys palpably affected by the music and life of David Wilcox. We have only met on two occasions--once at a vocal workshop a couple of years ago and more recently at a house concert where I bought this book. But Danny's open and gentle spirit makes it easy to feel he is your friend even after single meeting. He has also been in my house (virtually) on a number of occasions as he gave vocal lessons to my wife via Skype. The reading of this book helps me understand and appreciate more fully the depth of his insights into vocal technique through his decades-long study of the breath.

I have given very few books five stars on Goodreads and I give this five-star review not because Danny is someone I know, but because The Boy at the Gate is an amazing example of memoir done right. Were I to have done a similar review of the CD 800 Voices on which this book was based, I would probably have given it a three- or four-star rating. Despite my affection for singer-songwriters and story songs, I never quite got into Danny's CD, though I loved the openness he displayed in sharing his songs about his experience of being abandoned by his "Ma" and left in the oppressive and abusive environs of the Artane Industrial School in Dublin, Ireland. Now, having read his remarkable account, I look forward to revisiting that CD and taking those songs in with new appreciation.

The Boy at the Gate is Danny's gentle and forgiving telling of what can only be described as a heart-wrenching, soul-crushing and physically abusive childhood. Danny grew up in a home of neglect in Dublin and then, in 1955, was thrown into a Lord of the Flies world with more than 800 other boys from ages six to sixteen. The Artane Industrial School was even worse than being lost on an island with a bunch of boys because there was adult supervision - supervision in the form of severe physical abuse and emotional neglect handed down by a staff of just forty members of the Christian Brotherhood. The abuses of Artane have been well documented by the Ryan Report.

It is also the story of the redemptive power of music and how Danny was able to survive the trauma of the Artane prison by pouring himself into the Artane Boy's Band. Music keeps him grounded and gives him hope. Music gives him a constructive place to push his energy, his anger, his cries of anguish. Music gives him a future--something that many of the sixteen-year-old graduates of Artane were unable to find as the perverse social skills (really, survival skills) they developed on the desolate playground of Artane prove utterly ineffective outside the schoolyard walls.

I found many aspects of this book remarkable: Danny elegantly captures the voice of his little boy self. We see the streets of Dublin through his child eyes and hear it described through his voice of innocence in the truest sense of the word innocent. Even as he recounts his childhood criminal escapades of stealing food for himself and his two younger sisters and twin baby brothers, you understand how limited is his comprehension of the events he witnesses and the emotions he feels.

Danny effectively moves back and forth between his child voice and his own adult voice as he tells the story of how these experiences ultimately unleash a torrent of emotions and memories that quickly take the form of a collection of songs--his 800 Voices CD and, still later, this memoir. The echoes of that young voice resonate with the voice of his adult self and the co-mingling of these distinct voices is a tribute to Danny's gifts as a musician and arranger. That he is able to accomplish this same richness in prose--his second language--as in music is a thing to behold.

I broke my habit of night-time reading to finish the last 25 pages this morning. The closing revelations were truly surprising and moving. His Epilogue, Author's Notes and Acknowledgements appending this memoir were not afterthoughts; they complete the story by adding important context and perspective to the emotional portraits and landscapes he lovingly crafted in the prior pages. Those final pages also demonstrate the remarkable writing abilities of the adult-voiced Danny. The contrast of the early pages with the latter reminded me of experiencing a Monet retrospective; I was dutifully appreciative of Monet's impressionistic works, but came to see them on an entirely new level once I saw his earlier works that included lushly detailed paintings. I was able to see that his Impressionism works, like Danny's childhood recollections, were not lazily slapped together, but were deeply artistic and telling communications of the essence of the captured moment.

Perhaps what was most remarkable to me was the redemption he creates in the telling of it all. He leaves me wanting to be that same spirit--one who understands the human condition and stands ready to forgive and receive forgiveness from others and from myself.

View all my reviews

Monday, April 08, 2013

Reflection - A New ACMImimi Video Project

I am cross-posting this from my ACMImimi blog. Thank you for helping make a great video that can inspire others...

I've written a new song, "Reflection," that speaks about the cancer journey as seen through the eyes of a caregiver and lover of one experiencing cancer. You can listen to an acoustic demo of the song at ReverbNation or through the widget below. The lyrics are at the end of this post.


The Reflection Video Project 

I'm now working with some musician friends -- Bill "Bumblebee" Davis and Travis Erwin -- to create a more polished version of the song, which will be soundtrack for a new video featuring, well, I hope, you. If you have a loved one -- be they a spouse, uncle, mother, friend -- whose chronic illness, cancer journey or other healthcare challenge you'd like to celebrate, please send an email to Reflection@ACMImimi.org:
  • Attach a picture (higher resolution is better - JPEG preferred) 
  • Include a brief quote, message of hope or just an "atta-boy" note that's about twitter length (140-ish characters) and suitable for sharing 
  • Let us know the names of the folks in the picture (first names only if you want) and where you are from (state/country is sufficient if that's all you want to share). 
  • Tell us your story too if you're willing to share it. 
You can also post your picture/message/story as a comment on this blog post. By sending the picture, names and message, you are giving me permission to use them in the video montage, post them here on ACMImimi.org, and otherwise use them to promote the song and video.

Contributors to the video will, of course, automatically be eligible to become Fellows of The College (but you still have to fill out an application form). Unlike many honorifics, the FACMImimi designation comes at no cost to the recipient (at least until such time as The College can figure out a way to charge real money for it) and is based purely on one's contributions to the art and science of Medical Informatimusicology.

Okay, that last paragraph wandered back into the highfalutin voice of ACMImimi. But please know that we at The College are grateful for all that you do for making healthcare work better and loving people with medical needs. We hope this project will inspire us all to be better caregivers and to see the beauty in our loved ones even as they face difficult health challenges. Thank you.

Reflection 

Autumn rustles out my window
Winter's time is near
Shorter days cast longer shadows
On the path we walk from here
It's a detour undesired
Still it's ours to share
With a passion so inspired
I'll go with you anywhere

Just let me be your mirror
So you can see
Even as you're changing
You are beautiful to me
Let me be your mirror
Let me be the one
Let my eyes reflect your beauty
As the moon reflects the sun

It's easy to be frightened
When the weather rolls in
The senses are heightened
And faith wears thin
All the slings and arrows
Start to take their toll
If we focus on the narrow
We miss out on the whole

So let me be your mirror
So you can see
Even as you're changing
You are beautiful to me
Let me be your mirror
Let me be the one
Let my eyes reflect your beauty
As the moon reflects the sun

I can't promise you a miracle
Still I'll pray one comes our way
I'll be right here through it all
And I'll love you every day
In every way
So hear me say

Please let me be your mirror
So you can see
Even as you're changing
You are beautiful to me
Let me be your mirror
Let me be the one
Let my eyes reflect your beauty
As the moon reflects the sun

(c)2013 Ross D. Martin

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
relentless
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 (www.mederifoundation.org), 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.