197 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.
The 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.
As 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.
Blue 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.
With 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.
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.
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 →
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 →
On October 12, 2013, CLOUD co-founder, Gary Thompson, had the privilege of starting his TEDx World Tour at TEDxWeldQuay in Penang, Malaysia in tribute to his honored hero and daughter’s classmate, Kethan. Following his talk at the Whiteaway Arcade, Ch’ng Chin Chin from Penang Monthly caught up with Gary for an interview on his talk, his connection to Kethan and the implications of CLOUD for the future of the Internet. Ch’ng Chin Chin beautifully captured the story in this article recently featured in Penang Monthly:
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.
Ten 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 →
Gary Thompson, is not only the curator of The End of Linearity, but the co-founder of CLOUD, Inc. CLOUD – Consortium for Local Ownership and Use of Data – will be the manifestation of much of the thinking embodied by the End of Linearity. Those posts that relate more to Gary’s thinking than just CLOUD’s thinking are shared here.
As Apple builds out iCloud, we at CLOUD are building out something equally exciting: the next Internet. A few months back, I posted a discussion here asking how Knowledge Navigator connected the Amazon and the Sahara data sets.
I loved Knowledge Navigator’s vision and remember showing this video during customer events frequently when I was in the sales office in Chicago for Apple in the late 1980s to early 1990s. Siri, the iPad, FaceTime… so much of Knowledge Navigator has come true. With all these advances, there is still an underlying need for something like HTML but for privacy, security, identity and data to create the digital fabric underlying Knowledge Navigator.
If you visit CLOUDCircles, my TEDxAustin talk, “Reweaving the Fabric of the Internet to Transform Humanity,” is available in the videos. I know my ability to Think Different is driven by my over a decade at Apple.
(Gary was at Apple from 1987-97, and 2003-2006)
There was a wonderful show in the late 1960s and early 1970s called Laugh-In. As a young child at the time, it was my first memory of watching television with my mom and dad. I can’t remember if it was shown on the same night as the Muppet Show, but they both seem to go together in my memories. They were both quick and witty, and they made me laugh, even at the jokes only my mom and dad seemed to get.
Laugh-In featured many guests in addition to its hosts Dick Martin and Dan Rowan. One of those guests was Lily Tomlin who played Ernestine the Telephone Operator. She was famous for the line, “one ringy dingy.”
That line kept popping up in my mind as I prepared to write a follow-on blog post to A View from the CLOUD: Has Communication Really Changed (Part 1) The Laugh-in video of Ernestine the Telephone Operator is worth a quick watch now, both for a good laugh and to frame the rest of this blog post. In addition to laying the foundation for a piece on communication, it quite surprisingly also raised issues of privacy and security… Lily calls it omnipotent (that’s potent with an omni in front). I’ll tackle those in a separate post… Continue Reading →
Weaving is an art practiced since ancient times. Fragments of fabric dating to 5000 B.C. mean this art pre-dates the fabrication of papyrus in 3000 B.C. in Egypt. The art of weaving, its cultural and economic ecosystem, and the tremendous volume of innovation over the centuries that stems from weaving make for an apt and powerful analogy to understand the potential of the next phase of Internet and economic development.
In weaving, threads and yarns are essential. Threads are hooked to the physical loom, converting them into warp threads. Each warp thread passes through a heddle, which lifts and lowers the warp threads, creating a shed. The shed allows the weft thread to pass back and forth through the warp threads on a shuttle to create fabric.
Over time, looms become faster and mechanically driven and their complexity increased. Continue Reading →
Nowhere is the end of linearity more important than our individual rights, and Set the Default to Open takes a new look at this issue from both a legal and technology perspective.
From the introduction to the article in the forthcoming Texas Review of Law and Politics, Volume 14, Issue 1:
Rugged individualism and religious and economic freedom are among the most important factors that have contributed to the growth of U.S. global power and prestige and the welfare of its citizens since the founding of the original colonies. The trajectory of freedom has not always been smooth; however, the United States has remained a powerful example of the benefits and resilience of constitutional democracy. It has weathered a civil war and two world wars, grown from the shores of the Atlantic to the northern reaches of the Pacific, become a global economic and technological powerhouse, and even treated the great wound of slavery.
In the midst of this success the underlying tension in constitutional democracy—the force behind U.S. power and prestige—has the capacity to muddle the national vision. Tension between individual rights and the state is not new. It stretches from antiquity to the Renaissance to the modern world. The U.S. Constitution represents an attempt to codify the social contract between the government and its citizens in an enduring document that supports a functioning government and society. Continue Reading →
- By Ken Denmead
9:00 am | Categories: Electronic Geek
“It seems like every time I talk to people about privacy, there’s a feeling that younger users of online tools simply don’t care about the issue. Often, I am asked why privacy advocates like CDT push government and industry to protect privacy more robustly- when ‘no one cares’? In short, people seem to be asserting that digital natives like myself do not value privacy online. While this point is oft repeated, I think that this argument is flawed, and does not address the subtleties of privacy in the cloud, social networks, and other new online technologies. Simply put, these technologies are giving digital natives (really, all users) greater control over their information – and we use it.”
CLOUD Take: CLOUD, Inc. agrees with Heather West, policy analyst at the Center for Democracy & Technology, and writer of this guest post at Geek Dad. The time for greater control of our information has arrived, and the locus of that control should not be at the website but instead at the user, the individual.