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 →

Our Story | New Chicago Memories & The “Meme of Love”

IMG_2179Up until last Thursday, Chicago still belonged to just Maureen and I. As I wrote in “Our Story | The Windy City” before we left Austin, Maureen and I met in Chicago, were married here, had our first apartment and house here. After we landed on Thursday, though, at 4:30pm, we began to write a new chapter and create new memories with our children. It stopped being only our story.
It is important to point out the difference between meme and memories. Memories are specific things, and a meme is an idea. The most important meme that we needed to share with our children is the meme of love, Maureen and my love for each other and our love for them, and how, if they propagate that love, they can be “love mirrors,” as I told my daughter in a text last night. Like light, love can reflect, but rather than the mirror being a reflective surface, with love, the reflection comes from another’s heart.
I will come back to the meme of love, after spending a little time with our memories. Of course, the most important place to start any Chicago memory is with pizza, and so, we popped out, after settling into our hotel, and grabbed some deep dish at Giordano’s. I think my son’s words put it best, “it is a whole new world.” You could see the joy in his face as he enjoyed this finest of Chicago delicacies. As a dad, it was just great to be with he and my daughter, enjoying both the time and the food, as well as bringing back some goodies for Maureen and Katelyn in the room. I knew the weekend was off to a good start.
IMG_2201The thing with memories is they can not be directly replicated. My memories, even those from the exact same place as Maureen, will not be exactly the same as the way she remembers it. This is true for all of us, so even though, I went to our first apartment with my kids after the Cubs game on Friday, they don’t have my memories of this apartment. Their visit and this picture that captured it are their first memory of this place. I can tell them stories from when Maureen and I lived here, but I can’t put our memories directly into their minds. I can only tell our stories to them and let them add it to their experience. (This is an important distinction from a meme.)
IMG_2250The same was true of the Cubs game I went to with the kids on Friday, and the Northwestern game we went to as a family on Saturday. Maureen and I have done both these things in the past, separately and together, but until these two games, we did not have shared memories. We had memories we were telling our kids. Now we have memories with our kids. Those are really powerful, because we had so much fun. It wasn’t just parents and kids. It was five people experiencing pure joy with each other.. did we bicker some… of course, we did. We’re a family, but we were together, which brings me back to memes from memories.
IMG_2278The most important meme we wanted to share with our children was love. There were two powerful moments in the weekend, one planned and one unplanned, that manifested this meme, not just for them, but for Maureen and I, too. God was present in both cases. In the first, we returned to St. Matthew’s Episcopal Church in Evanston, Illinois for services on Sunday, where Maureen and I were married on July 14, 1990. The new reverend, Charles de Kay, and I had been in contact, and he graciously included us in the order of service for a blessing. The coolest part of this was the fact that my 13 year old daughter is the one that suggested we do this…a reflection from her “love mirror.” It was a precious opportunity to stand in front of God, once again, and profess our love in His presence, recalling a sacred act from 24 years ago, as well as creating a new act, this time with our 3 children.
The second moment of God’s presence was unplanned. It will forever be etched in each of our memories, because I know that in the moment in happened, we were each given a glimpse of heaven, if only for an instant. We were walking through Millennium Park on Friday. Our most important goal was to see “The Bean.” For those that know our family, they know Kyla (our 13 year old)’s nickname is the bean. We got some great pictures of the skyline and of the park, capturing those memories, however, it is the meme of love that is etched in our hearts forever.
IMG_2171As we turned a corner in the park, we came across a beautiful little walkway by a wishing pond, that carried you in to a butterfly garden, with some truly lovely flowers and landscaping. At this wishing pond, I instinctively reached in to my pocket and grabbed five pennies. Simultaneously, we each threw our pennies into the pond, making our own wish, each knowing that it was the same wish, for healing for Maureen (my wife, their mommy, her parents’ daughter, the oldest Diercxsen sister, Delta Gamma sorority sister, architect, book club member, swing sister and so many more precious friendships and relationships she represents in her “love mirror.”)
Literally seconds after flipping our pennies in to the pond, my phone rang. I looked down. It was MD Anderson Cancer Center. Whether or not we pursue the specific clinical trial we discussed at that moment on the phone is the least important part of the meme. In that moment, from wish (prayer) to God’s ears, we pierced the veil of heaven as a family. God gave us a peek in to His eternal love for us. He told my children, and Maureen and I, in a way more powerful than our act inside of His church on Sunday, that He is with us always. He didn’t send a dove, but He did send a butterfly into the garden, captured beautifully by my youngest, Katelyn, and connected with us through His meme, love. At Maureen and my wedding 24 years ago, we read this passage:
1 Corninthians 13:13
And now these three remain: faith, hope and love. But the greatest of these is love.
 
As I looked up this passage just now at BibleGateway.com, I was struck by the verse right before it, which jumps out at me now, like it will you.
1 Corinthians 13:12
For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
Butterfly in Chicago

Our Story | The Windy City

20 years ago, Maureen and I drove from Chicago to Austin as we opened a new chapter in our lives together. We made the trek to Austin driving through the mid-section of the US in our beloved little Acura Integra. It was a 2 door hatchback, and it was the first car we bought together. Most of our stuff was in a moving truck, but we filled up our Integra and packed it pretty tightly, leaving a small spot in the middle of the folded down back seats for our beloved Malibu, our Keeshound, and our first dog.

IMG_2137Today, we are in seats 34A, 34B, 35A, 35B and 36A on our way back up to Chicago for a family weekend. We wouldn’t fit in our Acura Integra anymore, not with the blessings of our children, Taylor, Kyla and Katelyn, now in our lives. We are not only going to Chicago for some fun together, but we are also making the trek, because Maureen and I have some stories we want to tell them together. Chicago is where Maureen and I met; where Maureen and I were married; where Maureen and I had our first apartment; where Maureen and I had our first house. This is our origin story. This is the story of how the seeds of our love were planted, nourished and have now blossomed into our cherished family of five.

For those that have read a few of our posts here or at CaringBridge or Rallyhood already, you know that Maureen and I are claiming our story in the midst of her increasingly challenging battle with breast cancer. This is our story, not cancer’s. As we determine the best way to turn off the cancer cells that have chosen to go haywire in her body, there is always the other side of the story. Without the love we share, without the specific combination of three very unique sperm and three unique eggs at three specific moments in time, Taylor, who is sitting in 36A, Katelyn, who is sitting in 35A next to Maureen, and Kyla, who is sitting in 34A next to me wouldn’t be here.

Think about that for a minute. Think about the unbelievable power and magic of life. Think about all the loved ones in your own life and how incredibly unique and precious they are. As we work to turn off the cancer cells in Maureen’s body, cancer can never take away our love for each other. Cancer can not take away our love for our children. The same strands of DNA that we are searching for places to attack with new treatments for Maureen are the same strands of DNA that God chose to combine with mine to create the lives of our children with whom we now travel.

For the next few days, the five of us will create a whole new set of stories together in Chicago… we will share them here with you as they unfold. This is our story, not cancer’s.

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…