I Have Been Provoked | Putting the Gloves Back On

Illinoise - Sufjan StevensIt is a cool and beautiful morning in Austin, Texas. I am sitting at my favorite coffee shop, Teo’s. As I drove into town with my youngest daughter, the light was crisp. It had the orange hues of the approaching fall. As the sun came up, you could see the hints of this orange light touching the highest parts of the trees, glinting off of the leaves. As I write, I am listening to an album by Sufjan Stevens. One of its songs, Chicago (track 9), was dancing through my ears as this light was dancing on my eyes. I’ve never heard this song before I heard it this morning on KUT, but it is perfect.

It is perfect because I met the love of my life, Maureen, in Chicago. As we approach the two year anniversary of her passing, Teo’s is important for another reason. It faces Seton Hospital. I look up, and I see the room in which Maureen and I spent her last day of life. I look up at 7 North and see where I held her hand and kissed her good night for the last time on the night of October 20, 2014. She has left earth, but I know she has not left me or the kids. Mornings like this morning, songs like Chicago from Sufjan, are her little ways of saying hello. While my eyes and my ears delight in this glorious Austin morning, my heart leaps just thinking about every day that Maureen and I had together on earth. Love remains our connection, just like it was what bound us together here on earth.

For those that follow my writing, you know I have several themes. From The Love of My Life to the Powdered Donut Manifestos to I Have Been Provoked, there are patterns to my words. These patterns extend beyond my personal writing to my professional blog, The End of Linearity. One of my themes there is the People Geography of Healthcare. This People Geography theme evolved out of Maureen and my journey through her fight with breast cancer. However, I don’t think “fight” is the right word. Cancer never had a chance. As I have written before, cancer attacks the body, not the soul. Cancer may have been lurking in her body for 11 years, after she was diagnosed in late 2003, but it never stood a chance. Maureen lived life each and every day. She inspires me to this day, and our journeys to MD Anderson Cancer Center inspired my work to “Reweave the Fabric of the Internet to Transform Humanity,” something I spoke about at TEDxAustin in 2011. Maureen was in the audience. I told her of my love for her from the stage.

TEDxAustin - MaureenAs I thought about the title to this post, I was torn between the People Geography series and I Have Been Provoked. I settled on I Have Been Provoked because why I do my work is as important as what I do. Watching the TEDxAustin talk will give you a glimpse into my vision, but why I do this work matters even more. You see I love people. I loved Maureen more than any other, but I care deeply for all people. I went into sales and marketing at Apple, where I met Maureen in Chicago, because it was the best way for me to meet lots of people. I also met lots of people as I sat in waiting rooms with Maureen, at oncologists, at hospitals, at infusion centers, at cancer centers, like MD Anderson Cancer Center, like Lurie Cancer Center at Northwestern Memorial Hospital. I have met lots of people through twitter communities, like #bcsm (breast cancer social media), like #gyncsm (gynecological social media), like Beyond the Pink Moon where I have met many “lovelies.”

What do the people in each of these places and in each of these communities have in common? Cancer? No. What they share is a common humanity in the midst of the toughest fight of their lives. In the midst of the darkness, they shine light. Just like Maureen, they are not defined by their disease. Do each of their cancers have some difficult to pronounce Latin name. You bet, but their God-given names are easy to pronounce: Alicia, Nicki, Christina and so many, many others. These wonderful people are why I Have Been Provoked. It would have been easy to write about the People Geography of Healthcare because this is National Health IT Week, and conferences like Health 2.0 in San Francisco are bringing together technology leaders to discuss the best ways to connect patients (people) with each other and with the best possible care.

However, as I watch and engage the tweet streams, something struck me. Everybody talks about being patient-centric, but everybody starts the conversation from their own silo. Whether it is communities like Smart Patients or PatientsLikeMe or companies like Flatiron Health with its oncology technology or standards fights around “interoperability” between electronic health records, they all start from where they sit, not where the patient sits. They each are doing good work, and I believe are doing good work motivated by a real passion to make a difference for patients, for people. However, what if instead of patient-centric, we had patient-built? Each of these silos and tools are incredibly useful. Crafted by caring and brilliant founders. Yet, they are still silos. What if they could be woven together, with the patient as the thread that creates the broader digital fabric of information they each need for their journey?

Any one who has been through the oncology ecosystem, fighting for their life, just like Maureen and I and so many others, knows how complex the journey is. There is no “one” silo or “one” tool that manages it all. From trying to get scans from one doctor to the next, from reentering your insurance information at each and every provider, from scanning the Internet to find people who are experiencing exactly what you are, it gets complex and complicated fast.

I have “put my gloves back on,” because the work of CLOUD – Consortium for Local Ownership and Use of Data – which I spoke about at TEDxAustin is designed to empower people, and by extension empower all the amazing tools and communities to do more, too. It is all in how we see the problem. It is all in how we think about the user experience. It is about where we start. I start with people. I start with love. I start with Maureen. I start with the orange hues in the trees. I start in Chicago. Where we end up is up to us. Each of us has today, and I Have Been Provoked.


If you have been provoked, too, join us on the journey. Put your gloves on. As I said at the end of my TEDx talk, we want to build this future with you. To be patient-built, we must be patient-supported. If you want to join us on the journey to this future, we are now making our GoFundMe public. You can learn more here.  We are raising funds to build out the CLOUD organization, file for non-profit 501(c)(6) status, and maintain our momentum, ahead of larger commitments from industry, foundations and other organizations. Together, we can advance this future for not only healthcare and the fight with cancer but transform privacy, security, identity and data across many industries.

 

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The People Geography of Healthcare | Human-Centric Thinking (Part 3)

Her Smile197 days ago, I wrote and posted Part 2 of the People Geography of Healthcare. 26 days later, I said goodbye to the love of my life, Maureen, my beautiful bride of over 24 years. Early in the morning of October 21, 2014, at Seton Hospital in Austin, Texas, with me by her side, she passed from this world to the next. The genetics of love beat the genetics of cancer. In the Love of My Life section of my personal blog, The End Of Linearity, I have been writing since before Maureen’s passing and since about the personal side of our journey, my love for her, and our stories. Here in the CLOUD section, I write about the implications and observations I have gained into healthcare in general and technology more broadly as a result of this journey.

RipplesThe depth of my passion for my work can only be understood by understanding the depth of my love for Maureen.  This short video, The Love of My Life | From the Heart, on Vimeo, shares my love with both words and tears. These words and tears still don’t come close to explaining just how much Maureen energized me, transformed me… built me. I am who I am, because she is who she was. My every remaining breath is dedicated to telling her stories and our stories so as to drop my pebble in the pond of humanity, to make whatever difference I can to make even just one other person’s battle with cancer better.  I truly believe that if each one of us acts from a position of love, then the cumulative effect of that positive energy can change everything, not just the battle with cancer.

From TEDxAustin in early 2011 to TEDxWeldQuay in Penang, Malaysia to TEDxTrastevere in Rome to TEDxTallaght in Dublin (all in one week in October 2013), the fight with cancer has energized every action I have taken. Each of these TED talks was motivated by love, love for both Maureen and for young Kethan, an 11 year old boy who I met at our kids’ school in late 2008, right when Maureen’s breast cancer recurred. Kethan passed in the summer of 2013 due to the side effects of his treatments for leukemia.

Screen Shot 2015-04-10 at 4.03.10 PMAs I think about the 26 days between Part 2 of “The People Geography of Healthcare” and the passing of my beautiful bride, Maureen, I can’t help but think about the 26 days I wrote about in Part 2. As I said in that post, “How is it possible that a genetic test that takes 14-17 days can’t start because it took 26 days for someone to finally take action to find my wife’s sample in the archive at Clinical Pathology Labs in Austin, Texas? How is it possible that Foundation Medicine, after taking action on September 3 and 4 on an order executed by our oncologist on August 29, would not act again until September 19, when our oncologist checked in? Even more disturbing, how is it that I had absolutely no visibility in to any of this, so I could jump in to the ring to get things moving?” As I also said in that post, the goal of my observations were not to point blame because blaming is never useful. It is pointless because it does not seek to find answers. Blame can never find answers, because blame looks backwards. Change looks ahead.

Interestingly, it is Foundation Medicine that is again provoking me to write. I couldn’t quite figure out what would motivate Part 3 of this series. A recent update on the appeal from Foundation Medicine from our insurance provider, Blue Cross Blue Shield, for coverage of their genetic testing is one of two motivating factors that is at the heart of this, Part 3. Before I proceed, I want to point how just how vital the genetic testing that Foundation Medicine and others provide will be in the future of  personalized medicine and cancer treatments. Theirs is good and important work. The weekend before Maureen passed, we identified a specific mutation in Maureen’s cancer for which there was a clinical trial for a new therapy. Let me repeat that in a slightly different way. The fact that Maureen had breast cancer was irrelevant at this point. Where the cancer started was less important the genetic pathways inside of it, allowing it to metastasize. Genetic testing would let us figure out how to turn that off.

9d3006f79087b118b14a56be41d37ed0Blue Cross Blue Shield has once again, over 5 months since Maureen’s passing, told Foundation Medicine that genetic testing is “experimental.” This is beyond short-sighted. It is inhumane. The first treatments for leukemia talked about in the recent PBS documentary, “The Emperor of All Maladies,” were once experimental, too. Those treatments now ensure that over 85% of pediatric ALL (acute lymphocytic leukemia) cases are “cured.” I am not angry at BCBS. It is important to note that throughout Maureen’s on and off 11 year battle with breast cancer, BCBS said yes to everything. Everything. If our oncologists believed that a treatment was necessary and could help, then BCBS never stood in the way. I am very, very thankful for that. However, having to look at mail that relates to my deceased wife is beyond irritating. It is a sign of how our system is broken, as I discussed back in Part 2. I should not have to see these letters, especially when they are addressed to Maureen. I’m sorry BCBS, but there is no forwarding address for heaven.

The second motivation for this post on the “People Geography of Healthcare” comes from another piece of mail that I received just after Easter. This one was from Life Line Screening, sponsored by Seton. You may recall that at the beginning of this post I mentioned where my wife passed from this world to the next, Seton. Again, just to be absolutely certain that the following is not misunderstood. I love the folks at Seton. We were on floor 7 North, the oncology wing, when Maureen was welcomed home by her maker, her God. The nurses, the staff, the atmosphere were all incredible. The Daughters of Charity would be proud of the dignity and love with which we were graced, not just in their care for the one day that we were there alive but in the dignity in which Maureen’s body was presented for each of my three kids to come say good bye to their mom the afternoon of October 21. I consider that room to be sacred space. It was Maureen’s portal between heaven and earth.

mail_stackWith that said, there is no greater clue to just how broken our system of information and personal data is than to receive a marketing piece for screening to find “unrecognized health problems.” Dear friends at Life Line Screening, trust me. Maureen’s health problems were clearly recognized. She hasn’t needed screening for any of them for over 197 days, and quite frankly, the genetic screening from the good folks at Foundation Medicine would have gone a lot further to helping us and her than any other. 

Here’s the rub. Foundation Medicine, BCBS and Life Line Screening are not at “fault” for any of this. As I said in Part 2, “the system is broken.” The way in which we manage information is broken. On October 21, 2014, I not only said goodbye to the love of my life, but I was sent a piece of paper, a death certificate, that told the world what my family and I already knew. We will know that we have fixed this broken system the day that piece of paper can “talk,” communicating with every data and marketing system in the world what God already knows. Maureen isn’t here any more. She is part of the chorus of angels, and she doesn’t need any more mail.

I Have Been Provoked | Part Two

Screen Shot 2015-01-29 at 9.27.35 AMI ended Part One of “I Have Been Provoked” with these words, “we have to rethink the fight with cancer.” I never expected to be in the middle of this fight. Heck, I never expected to hear the words, “you have cancer.” Even worse, those words were not spoken to me. They were spoken to my wife just 11 years ago. 3 months ago, I woke up in a room at Seton Hospital in Austin, Texas, and my wife was no longer breathing. Cancer did this. Cancer. Cells that have lost their sense of direction, their sense of purpose, their ability to control themselves. I have been provoked.

Now, it is also important to point out what cancer didn’t do, can’t do, will never do. Maureen was Maureen each and every day of her fight. She was a beautiful mother of three, an architect, my wife, my BFF, my soulmate. Cancer only attacks the body. It does not attack the soul. God owns our soul, and He welcomed my sweetie home the morning of October 21, 2014. He breathed new life into her soul, as cancer lost its fight that day. Cancer only attacks the body, not the soul.

But, I have been provoked, and I am speaking in stark terms, as I said in Part One. We have to speak in stark terms. Over 7 million people will have their bodies stop working this year, like Maureen, because of cancer. Some of the people in this fight are my friends, people I love dearly. Cancer changes everything. Sure, we have some tools that let us wage the fight more fairly for some cancers than others. These targeted therapies are exciting. Some, like Gleevec, literally turn the tables on cancer. They go into those cells and basically say, “I am sorry you are confused. I am sorry you have lost your sense of direction. I can’t fix you, but I am going to stop you. The rest of this beautiful body doesn’t need you wreaking havoc on it. So, stop. Now.” We need more of these tools. These 7 million people are too precious, too beautiful, too special, just like Maureen. We can and must change the terms of battle.

I have been provoked. We all need to be provoked, because, quite frankly, not only has cancer lost its sense of direction, but we have lost our sense of direction in the fight itself. When I go into waiting rooms, I see cancer in the faces of the people sitting there. Close your eyes and see them for yourselves. They are old, and they are young. They are female, and they are male. They are white, black, hispanic, asian. They are us. And, they are scared.

Perhaps, they have just been diagnosed for the first time. Perhaps, they have finished their treatment, and they are hoping to still be in remission after a month, a year, five years. They are scared. What will I do? Will it work? Has it come back? Will I have nausea? Will I be able to give birth to my daughter was the question we asked 11 years ago. Will I get to watch our children graduate high school was the question we asked 6 years ago when Maureen’s cancer came back. Every question is a hard question. Every cancer is a hard cancer. Every time I look into the faces in a waiting room, I wonder about the questions each and every person is asking of themselves. We need to question ourselves and ask if we have been provoked enough to change everything. I have.

I have no special expectations of myself. I remember frequently these words, “from dust to dust you shall return.” This body is not mine. It is only mine for a day, this day. Because, right now, I am breathing, and I can do something. I can do something different. I also realize this is not about me. This is not about any of us. This is about being provoked. This is about hoping others are provoked. This is about hoping others are provoked enough to be willing to change everything. Provoked enough to rethink research; provoked enough to rethink clinical trials; provoked enough to rethink patents and regulation; provoked enough to realize that collaboration is as important as competition; provoked enough to rethink hospitals, cancer centers, healthcare; provoked enough to realize that onco-philanthropies were born not to compete with each other but to compete with cancer; provoked enough to realize that we don’t have to do everything in the fight; but provoked enough to realize that the one thing that we can do well is exactly what the fight needs. And, the fight needs each of our individual gifts, right now, right here, today.

As Peter Gabriel does so beautifully performing this orchestral version of the David Bowie/Brian Eno classic, “Heroes,” live in Verona in 2010, “we only need to be heroes, just for this one day.” We each have today. We must be provoked. We can be heroes.

The People Geography of Healthcare | Human-Centric Thinking (Part 2)

Is it more important to have the right answer or to ask the right question? After the past few weeks interacting with our healthcare system, specifically its oncology components, it has become abundantly clear to me we are asking the wrong questions. A few years ago, at TEDxAustin, I reflected in my talk on the fact that we had to carry a CD of my wife’s tumor images from Austin to Houston for our discussions at MD Anderson Cancer Center. After these past few weeks, I wish that was the only challenge we have in moving information around the healthcare system to provide the right care to a patient.

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Gary Thompson @ TITLE Boxing Club – West Loop, Chicago

This system is broken, and physicians, health care providers and many, many others, beyond the patients, are incredibly frustrated by it all. As Maureen’s oncologist was kind to note about my work on CLOUD, “You may be doing more good than most can imagine.” Continue Reading →

The People Geography of Healthcare | Human-Centric Thinking (Part 1)

PersonLately, we are hearing a lot of talk about patient-centric care, ePatients and a myriad of other approaches to putting the patient in the center of the healthcare system. Like Web 2.0 and the dot com era before it, and more recently, the terms cloud computing and big data, there are certain phrases that require deeper levels of thinking to truly understand what they mean. CLOUD’s vision was born from one patient’s journey through a fight with breast cancer; a journey that continued this past week; a journey that inspires this first post in a whole series on the “people geography of healthcare.”

Part 1 of this series frames this CLOUD vision, so that Part 2, which explains our journey, can be better understood in this new context. Patient portals are one easy example of how words can be co-opted and used beyond their actual meaning. Is a patient portal really patient-centric when the “portal” requires a patient to log-in to a website connected to a specific system at a specific hospital or provider? On a patient’s healthcare journey, there are likely dozens of touch-points with various healthcare providers, it is simply not patient-centric when to access needed information, the patient must log-in to all these different portals and then collate and aggregate the data. Although the interface is graphically oriented because of HTML and the Web, it really is nothing more than a 21st century terminal log-in to a centralized system. New tools at all levels but old information technology (IT) thinking, not human-centric.

Cloud & MounatinsAnother word that is starting to pop up more frequently is ecosystem. At my talk in Rome at TEDxTrastevere last fall, I reflected on this concept, going further than my original comment at TEDxAustin a few years earlier. In my talk at TEDxAustin on “Reweaving the Fabric of the Internet to Transform Humanity,” I said the following, “from the perspective of a raindrop, there is no such thing as a cloud.” At TEDxTrastevere, in my talk titled, “Can a New Internet Change the Human Ecosystem,” I went further in this line of thinking and put out this challenge. “Can we create a human ecosystem, capable of harnessing the same force of raindrops in the water ecosystem? Can 7B human beings acting together carve a canyon through the heart of cancer?

The key to an ecosystem is that it is dynamic. It has no center. It is fluid. One hospital or medical center simply can’t be an ecosystem. As I noted in my TEDx talk at Rome, the same raindrop that flows in a river at one moment could be evaporating in the next moment, rising back up into a new cloud, a cloud that might last only a few moments or might erupt into an anvil cloud, unleashing not just torrents of rain but lightning as well, as the raindrops collide with each other.

RiverIn the case of Maureen and my journey this past week, this evolved thinking on ecosystems is vital, because in order to be patient-centric, we need first to be human-centric. In order for our ecosystem of personal cancer care to have any meaning, we needed our “raindrops” to collide with other raindrops in our own unique cloud. Our oncologist at MD Anderson in Houston, our new friend at Texas Oncology in Dallas, as well as our primary oncologist at Texas Oncology here in Austin are all vital components of our cancer ecosystem. Success in our fight with cancer will not come from patient-centric thinking but instead from human-centric thinking, because we are only one player, one raindrop, in this larger ecosystem. Like clouds and rain, these interactions occur in the context of a larger ecosystem, a system that is constantly evolving. More on that in Part 2…

What is the Next Mosaic Moment for the Internet?

About a year ago, Susannah Fox “penned” another one her thoughtful posts, this one was about health data, “Thinking critically about Big Data and health care” in response to an article in the New York Times, “Sure Big Data is Great. But So is Intuition.” I drafted a View from the CLOUD in reaction. Susannah has a habit of great trend-spotting, as well as provoking the rebellious innovator and “meme-breaker” in me. Continue Reading →

FDA Hacked | When Is a Database Nothing More than a Digital Filing Cabinet? (Part 2)

We start Part 2 of “When is a Database nothing more than a digital filing cabinet?” where we left off in Part 1. According to Wikipedia, “a database is an organized collection of data.”
If we truly embrace this definition of data, then we can completely redefine the issues of security, privacy, interoperability and identity. However, there are two essential words in this short definition of a database. One of them is data; the other key word is “organized.” Nowhere in the idea of organizing data is a further definition of when it must be organized. We used to organize data by carving information into wet mud that then dried into tablets. We progressed to scribes replicating information with ink on papyrus and really accelerated things when Gutenberg rethought the wine press and moveable type with the printing press. Unfortunately, for all the horsepower and capacity of our databases, our organizing principles remain paper-based. Continue Reading →

FDA Hacked | When Is a Database Nothing More than a Digital Filing Cabinet? (Part 1)

The title of this post is a well worn meme for CLOUD, but the recent hacking of the FDA’s systems forces yet another revisiting of the topic. Rather than asking lawmakers for the FDA to launch a third-party audit of its recent breach, “FDA Hacked, Drugmakers Want Proof that Proprietary Data is Safe,” PhRMA and BIO should ask that the architecture of data on the Internet itself be revisited. The current notions of a database are antiquated, and until we rethink the problem, we will have breaches like this one, the 40 million credit cards of consumers at Target and many, many others.
The simple problem is this. Current security models for databases are akin to building moats around castles, with the digital analogs of wider moats and more alligators used to increase security.  I am certain there are many definitions for a database, but I went  to trusty Wikipedia for this one. “A database is an organized collection of data.

Nowhere in this brief definition does it mention that the database has to be managed by a DBMS. Continue Reading →

Why the Noun Interoperability is Pointing Us in the Wrong Direction

Language is not only a way to communicate but also a glimpse into how we think. Our choice of words reveals the way in which we understand the underlying subject matter. This could not be more true than with the word, interoperability. It is not that interoperability isn’t a noble and worthy goal. The challenge is that it comes with assumptions. For something to be interoperable, it assumes that the “exchange” is occurring between two fixed systems. Our goal is to push things back and forth between these systems. In my mind, the more powerful piece of the definition of the adjective, interoperable, is the second part, “make use of information.”

If our goal is to make use of information, then current approaches to interoperability will simply not get us where we need to go.

Continue Reading →

A View from the CLOUD: “Sure, Big Data is Great. But So is Intuition.”

This View from the CLOUD was originally sparked by a much appreciated spot by Liza Bernstein and Susannah Fox’s kind invitation to make a comment at her blog, based on the original article, “Sure, Big Data is Great. But So is Intuition,” by Steve Lohr in the New York Times just before the New Year. Take a peek at both the article and Susannah’s blog. There are a number of excellent comments at Susannah’s blog, taking a number of different perspectives on the topic. Following is CLOUD’s comment, taking a different view, one that goes to the deeper roots of the issue. Like Web 2.0, the challenge with Big Data is it has so many different definitions…

The quiet reality of all of this brouhaha about Big Data in the last several months is that the answer to these issues has nothing to do with data.

Continue Reading →