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…

Trophic Cascades, A Human Ecosystem, TED, Love and Cancer

Before I talk about the trophic cascade, I need to provide a little locational context. I am sitting next to the woman I love. Let me repeat that, I’m sitting next to the woman I love.  Unfortunately, we are at Seton Central hospital after some outpatient day surgery. This great piece, “Marriage Is Not For You,” reminded me exactly what it means to say this word: LOVE. For 23 years, the best of times are the ones when I’m totally and completely focused on Maureen, the woman I love, or the kids we’ve had the privilege of bringing in to the world.

IMG_0003Ten years ago, we heard different words, words that started us on the journey that has me sitting next to her again… in a hospital room, waiting for her to recover from yet another procedure, this time, a biopsy. What were those words? They were “you have cancer.” My words right after she heard those were “I love you.” Take the time to read “marriage is not for you,” because it really captures the essence of what it means to be in love. I will admit to not always getting this right over the last 23 years, but boy, when I do, I am the absolute happiest man in the world. To know our story with cancer, I point you to this piece I wrote a few years back, “Survivorship is Not a Phase.” A couple of weeks ago, we learned that this stupid cancer had “snuck out” of the Herceptin box we’ve had it in for the past few years. It has found its way to a few new spots, and this biopsy will tell us what this round of cancer cells look like now, so we can beat cancer back again.

So, what in the world does any of this have to do with a trophic cascade? Continue Reading →

My Tribute to Kethan | From TEDxWeldQuay to TEDxTrastevere

Sitting aboard Thai Airways on my flight from Malasyia to Rome, I am looking both ahead and behind me. On Saturday, my TEDx world tour reached its official start as I took the stage of TEDxWeldQuay. The Artistry Within of this event capturing every aspect of my time in Penang itself.

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I was greeted by Mee Quin Ooi from their TEDx committee at the airport on Friday and was then whisked off to a wonderful lunch in the Georgetown area. Not only did I properly learn how to use chopsticks, but I discovered a plethora of amazing tastes. Malaysians love their food, and I now understand why. Either they love their food because it is so good or it is so good because they love their food. Either way, this lunch was a spectacular gift.

On Saturday, I awoke with great anticipation. Although I am deeply grateful for the chance to take the stage of each of the three TEDx events at which I will speak, this one in Penang was special. I was in Malaysia, where Kethan’s story started. Although he was born in Austin, his family is Malaysian. This is who he was, where he began and where his Appu and Appachi; his Appu and Amamma still live. Continue Reading →

My Tribute to Kethan | Walking on the Other Side of the Street

As I fly from Kuala Lumpur to Penang, Malaysia, I am in great anticipation of this historic city and the privilege of taking the stage of TEDxWeldQuay tomorrow at the Whiteaway Arcade. Above the clouds, it is easy to forget what is below. From the other side of a cloud, everything below it can look the same.IMG_0576

Just like I came down from the clouds on Tuesday and landed in Kuala Lumpur, I know that in a few short moments I will come down from above these clouds and land in Penang. Just like I was greeted by Kethan’s family in KL, I will be greeted by the extended TEDx family in Penang. I am excited to meet Mee Quin Ooi, who will greet me at the airport, as well as Yee Ling Neoh, the curator for this, the first TEDxWeldQuay. Continue Reading →

My Tribute to Kethan | Making a Difference

As I shared in my recent post about my TEDx world tour for Kethan, this journey is sparked by the deep impact that Kethan and my wife, Maureen’s, cancer have had on my life, my work and my soul.

It is my deep belief that the “Power of People. Connected.” will be vital to finally dethroning the “Emperor of all Maladies,” as Sidhartha Mukherjee calls it in his book of the same name. As I make my journey from Malaysia to Rome to Dublin, it is my hope that my TEDx talks will spark a desire in each of us to follow our souls and our hearts to be inspired like I have been by Kethan. That inspiration can and will take many different forms. We can each be a pebble that creates our own ripple effect in the pond of humanity.

For me, there are a few causes or ponds into which I am throwing my pebble in the fight with cancer. Continue Reading →

someday is today: Kethan’s Story

A little over 5 years ago, my wife, Maureen’s, breast cancer recurred. She is doing well, but not long after our family’s journey with cancer took this new turn, I met Kethan. He, like my daughter, was starting 1st grade at St. Andrew’s. I had the privilege of meeting Kethan, his mom and his dad early on in the school year. Kethan has been my honored hero (and little brother) ever since.

Kethan’s battle with leukemia changed my life, brought me to the Leukemia and Lymphoma Society; and as this video makes clear, this commitment to LLS has now come full circle. From a term as board chair of the local chapter to my role on the national board of representatives to 4 rides around Lake Tahoe with Team in Training and a couple of Mission Days in Washington, DC in 2012 and 2013, my work with LLS has been unbelievably rewarding.

LLS is a great organization, and Kethan’s story makes clear that they will “move heaven and earth to help patients” in the words of LLS’s CEO, John Walter. Unfortunately, the original Kethan’s Story, shot in May, was one of hope. We expected him back in 6th grade. On July 11, his return to 6th grade was stopped in its tracks. This “human rainbow of one” left this world for the next. However, like all rainbows, Kethan never lost hope. I will never forget this special young man. We must now continue his fight. Thank you LLS for this fitting tribute to Kethan and his family.

A View from the CLOUD: MD Anderson’s Moon Shot to End Cancer

43 years ago, on July 21, Neil Armstrong stepped on to the surface of the moon; 15 years ago tomorrow on LIVESTRONG day, Lance Armstrong was diagnosed with cancer; and 9 years ago this month, my own wife, Maureen, was diagnosed with breast cancer, while pregnant with our now 8.5 year old daughter, Katelyn.

As MD Anderson Cancer Center announces its Moon Shot in the fight against cancer, I know I’m not alone in my enthusiasm for their success. I’m sure that 28M other cancer survivors, their loved ones, their families and their friends are equally excited to hear similar words to Neil Armstrong’s: “That’s one small step for [a] man, one giant leap for mankind.” Reaching the moon in this case means putting this disease behind us once and for all. However, May 25, 1961 is an even more important date than July 21, 1969, when Neil spoke these words from the moon.
May 25, 1961, 51 years ago, is when President Kennedy announced the decision to go to the moon in front of a joint session of Congress. The work that followed this speech is the real legacy of the moon shot. As Naveen Rao makes clear in his blog post at LIVESTRONG, “One of the well documented successes of the space program of the 60’s was that the nation truly came together and collaborated towards the same goal.”
Cancer, cancer research, and all aspects of cancer support and community are indeed a collaborative effort. If you think about the Apollo program, there were a number of critical systems that had to work together for success. From the rockets that provided the propulsion to leave Earth’s gravity to the landing vehicle, capable of landing smoothly on the surface of the moon, to the reentry vehicle, that not only left the moon but did not burn up on reentry, to the astronauts themselves who prepared for all aspects of this journey, the moon shot was a testament to systemic thinking, rather than process-based linear approaches.
CLOUD was born out of a belief that increasing the velocity of connections between both people and data will not only transform the Internet but help us in “Rethinking the Fight Against Cancer.” Without a systemic rethinking of the Internet, as well as the fight against cancer, we will not achieve “a cancer treatment system that can outsmart an individual’s disease and offer them more than just comfort or hope,” as Naveen articulated in his post. To achieve this system will not only require MD Anderson to “work outside their walls” but will require all of us to rethink the physical geography of healthcare. Technology, like the Moon Shot, doesn’t just let us do old things in new ways but allows us to do new things.

We are honored to have LIVESTRONG in CLOUD’s Founding Circle as we seek to achieve this goal of doing new things with the Internet. On 2.19.11 TEDxAustin welcomed me to their stage to tell my family’s story with cancer, as well as share CLOUD’s goal of “Reweaving the Fabric of the Internet to Transform Humanity.” It is our sincere desire that this new digital fabric for the Internet will not only increase the velocity of connections amongst researchers and patients but also “free the data” in new ways, so that MD Anderson’s Moon Shot, LIVESTRONG’s 15 year effort being celebrated this month, and the many brilliant minds around the world working towards a cure can come together to beat cancer.
When we do, “that one small step for man, one giant leap for mankind.” are words that will be spoken not just by one man on the moon but 28M people all around the world celebrating a monumental achievement in our history as a species.