When I get to part 3 in a series, I realize that I have landed upon a sustaining meme, a theme that crosses many topics and many boundaries. Typically, at this moment, like my personal writing in the I Have Been Provoked series and my Powdered Donut Manifesto series at The Love of My Life, I stop labeling them Part 2, 3, and 4 and move to thematic titles. As a result of an excellent piece by David Blumenthal and Aneesh Chopra in the Harvard Business Review on Apple’s recent pact with 13 hospital systems to provide “access” to patient’s health records, I am moved to revitalize this series that ended in Part 3 in early 2015.
A lot “ended” in that window of time because my wife’s life on this side of heaven ended on the morning of October 21, 2014 after a courageous on-and-off 11 year battle with breast cancer. We were married just over 24 years when I awoke in my cot next to her bed at Seton Hospital in Austin, Texas. My wife was no longer breathing. I tell of this journey in my personal series, The Love of My Life. My kids share their journeys as well. So much of this journey didn’t make sense until I started reading Megan Devine’s, “It’s OK That You’re Not OK.” I’ve realized that the grief doesn’t start until the shock wears off. And, trust me, the shock of cancer, its treatments, its navigation doesn’t start upon the passing of the love of your life. It starts the day you hear the words, “you have cancer.” Even worse is when you you look into the eyes of your bride, and she hears the words, “you have cancer.”
It is truly amazing how much time it takes to get your “cadence” back, the rhythm of life. As Megan points out in It’s OK That You’re Not OK, it doesn’t come from moving past the grief but instead understanding it, embracing it in some ways, and living into your new reality. I will forever grieve because of my deep, deep love for Maureen. Taylor, Kyla, Katelyn, and I will not let cancer claim four more victims. We don’t like that it claimed Maureen’s life, but it never claimed her identity. She was Maureen until her last breath. We are reclaiming our lives from the claws of cancer. We will not be four more of its “side effects.” We have chosen love over death. However, as the kids and I move forward, we understand that to honor her legacy, we must create our own.
It would be beyond arrogant to claim my legacy now, as it is still being built. However, I will claim this. My work on CLOUD – Consortium for Local Ownership and Use of Data – is built on a foundation of love, my love for Maureen and my love for all who hear those fateful words, “you have cancer.” Will CLOUD’s impact be felt across the healthcare continuum from diabetes to cystic fibrosis to cardio-vascular and beyond? Yes. Will it be felt in the worlds of education, finance, and social media? Yes. However, it is its roots in oncology; its roots in Maureen and my many journeys to MD Anderson Cancer Center, Texas Oncology, and all the ancillary services necessary on the journey that inform it.
Maureen and I met at Apple in the late 1980s in Chicago, and when Steve came back in the late 1990s, he started a Think Different campaign. The Apple of today is not the Apple of before. Maureen and I would never have imagined, none of us early pioneers, would have imagined the Apple of today. I, too, imagine a new healthcare paradigm. We will not achieve it “by doing old things in new ways, but by instead doing new things.” The digital world affords us an opportunity to Think Different, and ironically, the very Apple that is doing so many new things is really doing anything new with its recent announcement with the 13 healthcare systems in its new pact.
Stripped to its essence, this is simply lipstick on the pig. Apple brings an elegant interface to accessing health records in the same way that any patient portal software does today. Prettier, but still a patient portal. Realize that I was at Apple in the early days. If there is ever a fanboy, it is me. But one has to look at things with clarity. I actually wrote about this all the way back in The People Geography of Healthcare | Human-Centric Thinking (Part 1):
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.
Does Apple change the way in which all of this information is viewed? Yes, of course. They are amazing at interfaces, but the reality is even on your iPhone, you are still logging in to a patient portal. The biggest challenge with all of this is the fact that we are creating APIs so that systems can talk to systems. We are not creating APIs where people can talk with people, and data can talk with data. We are working with linear processes as they exist, as opposed to going truly under the hood and creating a new paradigm that can lead to true disruption. The real disruption would be the idea that I have control over my data, and these 13 health systems have to ask me for access to it, rather than the other way around.
That is the whole point of CLOUD; the whole point of our soon to emerge new language CTML; the whole point of a people geography. David Weinberger in his book, Everything is Miscellaneous, talked about a physical geography of information. A library is an excellent example. Every book, with its Dewey Decimal code, has a place. A shelf. A home. That is the challenge of today’s approaches to healthcare IT, our information has a place. For now, that place is either an electronic health record (EHR) at one of these 13 systems or many others. That place is our real world data that exists outside of these EHRs, on our wrist, so to speak, with our Apple Watch or FitBit or on our smart phone. Rather than systems, information has to be about people. For me, that person was Maureen. It is time to Think Different. It is time for a People Geography of Healthcare, not an IT one.
“As we approach the eighth #PowderedDonutDay, this coming Sunday, Father’s Day, I am beginning to realize that Maureen wants me to architect a new skyline. Her love will permeate every aspect of my blueprints for the future. I am a survivor, and I am no longer afraid.” I wrote these words in Survivorship is Not a Phase | Part 2 30 months ago. 30 months. My last blog post was July 31, 2017 in honor of Lori Marx-Rubiner, just a few days before her passing on August 2, 2017. I had noticed the news of hospice on her friend AnneMarie Ciccarela’s Facebook page. I was moved to write, “I Have Been Provoked | 7.31, 10.21, and MBC.” The rest of the amazing connections can be found there, as well as my sadness, and my tears.
I am moved to write again today. As I look back across my various blogs, I realize this is the longest period I have been “quiet” since I started writing to the love of my life, Maureen, the summer before her passing on 10.21.2014. I started writing #lovenotes as her breast cancer “snuck out,” metastasized, that summer, because I did not want her CaringBridge page to be littered with news of disease and doctors but instead graced with love, my love, my love for her. As I am moved to write, though, I am also moved to ponder why I have been quiet. As I thought about my silence, I started to think about my own “survivorship,” something I wrote about in Part 1 and Part 2, in 2011 and 2015 respectively. Now, 30 months since Part 2, I’ve realized why I’ve been silent, but more about that and the reason for Part 3 in a moment.
MBC – metastatic breast cancer – “takes” 40,000 women (and men) a year. That is a little over 130 a day. 130 beautiful people. 130 human beings that God put on earth to make a difference. During the recent San Antonio Breast Cancer Symposium, I reconnected with, as well as met leaders in this space, like Katherine O’Brien and Shirley Mertz of the Metastatic Breast Cancer Network, and folks like Ginny Mason of the Inflammatory Breast Cancer Research Foundation, Bryon Davis of the Milburn Foundation, leaders like Dr. Susan Love, a breast cancer researcher and leader, as well as Chief Visionary Officer of her own foundation, dedicated people like Margaret Flowers and Marc Hurlbert of the Breast Cancer Research Foundation, and while at the Brinker Awards Reception for Susan G. Komen, I met folks like Barbara Segara, Edna Pacheco, and Anne Hamilton, passionate volunteers with Susan G. Komen. I also met someone else, and that story is when I started to understand a bit more about my silence.
For this next meeting to make sense, I have to go back in time. Back in time with stops both 28 years ago and 4 years ago. 28 years ago, I was meeting Maureen for the first time at the Apple office in Chicago. We both worked there at the time. We “officially” started dating on New Year’s Eve of 1988. That was the day I picked her up from O’Hare. She had just flown back from Ridgewood, New Jersey, her family’s home at the time. I had already fallen in love with her months earlier. One glimpse at her in the office, and I knew. I knew we were destined to be husband and wife. At the same time as all of this was unfolding in Chicago, something else was unfolding. Research. Critical research into breast cancer and new pathways. HER2 to be specific. Dennis Slamon was “wandering” the halls of his offices at Genentech to ensure continued support for this research into HER2 and ultimately, the Herceptin that would create a new therapy for this kind of aggressive breast cancer. Until 4 years ago, I didn’t know this research was even happening.
Fast forward 24 years…. 4 years ago. October 19, 2013. I was flying from the last of my TEDx talks in Dublin, Ireland, in tribute to my young hero, Kethan, who had passed that summer from the side effects of his treatments for leukemia. I was flying from Dublin to San Francisco to be with his mom and dad cheering on a friend, Jennifer Raymond, who was running the Nike Women’s Marathon with Team in Training in her own tribute to Kethan. It was a direct flight, and it took me over Chicago. Although there wasn’t any turbulence, I began to shudder. I was reading a chapter in the Emperor of All Maladies. It was the chapter about Dennis Slamon, HER2, and Herceptin. I was shuddering because I realized in that instant, reading that chapter from Siddhartha Mukherjee, the very drug that would extend Maureen’s life 20 years later when her breast cancer returned in early 2009 was being discovered.
Fast forward to early December. This month. I wasn’t originally planning to stay two nights at the San Antonio Breast Cancer Symposium (SABCS), but I happened to run into Victoria Wolodzko, SVP of Research and Community Health Programs, and Paula Schneider, the new CEO of Susan G. Komen, walking from one meeting to another at the convention center hosting SABCS. They graciously invited me to the Brinker Awards Reception they were hosting that Wednesday night. And, as I sat with Edna, Barbara, and Anne, I realized why I was there. Two awards were given, and as I heard the name Dennis Slamon, it all came rushing over me… my love for Maureen… the chapter in Emperor… the flight from Dublin to San Francisco. The picture to the right is me telling this story to Dennis at the awards reception. Of it all coming full circle. Of how “his” Herceptin let Maureen have more years on this earth and how those “extra” years let her and my kids: Taylor, Kyla, and Katelyn, get to know their mom better. And, I also realized why I have been silent, and why this was my first SABCS to attend.
Part of my “survivorship” has been the shield and the armor I discussed in “Survivorship is Not a Phase | Part 2.” Part of my shield has been staying distant from the very disease that takes 40,000 women a year, MBC, the same MBC that “took” Maureen on 10.21.2014. I’ve been deeply involved in the fight with cancer through my own work on CLOUD, as well as my dedication to the Leukemia and Lymphoma Society, recently featured in their annual report, however, I had kept my distance from breast cancer. It has been the reason for my silence these past several months. I miss Maureen, and it hurts. As we move ahead into 2018 and past our 4th Christmas this year without her around the tree with us, I know it will hurt forever, but I must face this hurt directly. Taylor put it best after his Senior Homily on 10.21.2016 at St. Andrew’s Episcopal School, “For 2 years, we have honored her legacy. Now, as we start year 3, we honor her legacy by creating our own.”
Powerful words. And, 10.21 has loomed large this holiday season. Taylor returned home from his first semester at the University of Virginia last Saturday night. I peeked at the clock on the stove as we walked into the house from the airport to pizza and hugs from his two sisters. 10:21. I also peeked at the clock on Christmas morning, as I sat down with my coffee, along with Taylor, Kyla, and Katelyn, to open gifts. 10:21. Survivorship is not a phase. The gift of SABCS has opened my heart to what is ahead in 2018 and how it is all connected. The holidays are always a rough and tumble of emotions. When a family is dealing with cancer, as ours did over Maureen’s 11 year on-and-off battle with breast cancer, it lurks in one way.
Over the last 4 Christmases, we have gone from being numb during that first Christmas without Maureen in 2014, to reflective in 2015 and 2016, and as the kids and I noted this year, 2017, to being joyous. Don’t read that wrong. We’d do anything to have Maureen back with us physically. We miss her greatly, but as she reminded us through the many instances of 10.21, that it is OK. That she is “here” with us, and that more than anything, she wants her legacy of love to manifest itself in new ways, not just looking back, but forward. The kids and I felt that powerful, uplifting spirit throughout the day on Monday. This new spirit will not just move me forward but will be reflected as I write more stories about being both a caregiver and a widower. I will no longer be silent. I have looked directly at my fear and pain, and as meeting Dennis Slamon reminded me earlier this month in San Antonio, it is all connected. Maureen taught us how to do more than “survive” over the course of her 11 year battle. Now, it’s our turn. 30 months after Part 2, We’re ready to starting writing the next chapter. We each have today, and today is a good day to be alive. And to love.
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.
My TEDxAustin talk, “Reweaving the Fabric of the Internet to Transform Humanity,” talks more about this vision. 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 →