The People Geography of Healthcare | People, Not Systems

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.

2017 Susan G. Komen Big Data 4 Breast Cancer – Menlo Park

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):

Laura Schneider for HBR

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.

Survivorship is Not a Phase | Part III

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.

 

I Have Been Provoked | 7.31, 10.21, and MBC

14 Years. Except for the year of the Deepwater Horizon oil spill in the Gulf in 2010 and Hurricane Ivan in 2004, we’ve been to Ft. Morgan, Alabama each and every year. We started going to this beach in 2003, the year of my bride, Maureen’s, mom and dad’s 40th wedding anniversary. We had so much fun that year we’ve made it an annual tradition.  I will return to the story of the beach in a moment. For now, I have to reflect and let the tears stream down my face.

For those that don’t know the acronym, MBC, it means metastatic breast cancer. The definition of metastasis is this, “the development of secondary malignant growths at a distance from a primary site of cancer.” That rather sterile, yet still scary definition, does not fully capture its full essence. 90% of deaths from breast cancer are due to MBC. And, as I write, women are dying because of it. One truly special human being, Lori Marx-Rubiner, is in hospice now. That is why I have tears. I don’t know Lori. I have not met Lori, but I feel like I know her. I “know her” because of her blog, ReGrounding. I “know her” because of #bcsm – breast cancer social media. I “know her” because of the special post made by her friend, AnneMarie Ciccarella, last week. Although AnneMarie posted “A FAREWELL, and a Love Story,” on Tuesday, July 25, it was written on Sunday morning as she headed off to see her friend, Lori. As the kids and I arrived at the beach in Ft. Morgan, Alabama that same Sunday morning, AnneMarie was with her “soul sister” in New York.

I cry for the same reason I cry every time I see a tweet with the hashtag, #bcsm, read a post in Beyond the Pink Moon, or hear any story of another human being facing a diagnosis of cancer. This shit is scary and hard. Breast cancer hits particularly close to home because it is a story I know too well. For over 14 years, I have “fought” breast cancer in the “2nd person.” The primary site of our “family’s cancer” was my dear, sweet, beloved Maureen. My soulmate, my best friend, my bride of almost 25 years, the mother of our 3 children, Taylor (18), Kyla (15), and Katelyn (13). Her primary site was her right breast and a bunch of lymph nodes. In the fall of 2003, while pregnant with our youngest, Katelyn, an astute obstetrician found a lump, and we had a biopsy.  Lori was diagnosed in 2002. Her cancer “came back” in 2011. Maureen’s “came back” in the fall of 2008. As I told AnneMarie in a message earlier today, I understand Maureen’s courage through the courage I see in not just those with cancer but especially those with MBC.

Seriously, think about the idea of MBC for a moment. To be provoked you have to really sink into your emotions. Let them overwhelm you. Let them consume you. The tears that are flowing down my face thinking about Lori come from the deepest part of my soul. The tears that are flowing throughout the MBC community and especially those that know Lori come from that same deep place. I “know” Lori because I know Maureen, and I know what it meant to watch MBC “take over.” We went everywhere. Asked every question. Got every scan. However, I knew when I saw the scan from a camera inserted into her lungs at MD Anderson Cancer Center in August of 2014, not long after we had returned from our 11th trip to the beach at Ft. Morgan that year. Maureen’s metastasis had reached the lining of her lungs. Lori’s metastasis went to her bones. Regardless of “where” the MBC chose to go, it “escaped” for both of them. 

Photo credit: 3cubedstudios.com

In Lori’s own words, “Let’s tackle what kills us…” Those words provoke me this day because Lori is exactly right. If 90% of women with breast cancer die from MBC, then that seems like the obvious target for our work, our research, our passion. My work and my passion flow this fight, and Maureen was in the audience at my talk at TEDxAustin in 2011, the year Lori’s cancer came back. I cry now because as I think about Lori’s husband and son, her parents and her sister, sitting by her side in hospice, my emotions from the morning of 10.21.2014 overwhelm me. They consume me. That is the morning I awoke at Seton Hospital to my beloved Maureen, who was no longer breathing. I cry not just because I “lost” her that day. I cry because I love her.

I cry because on Wednesday night at the beach in Ft. Morgan, Alabama, Maureen “stopped by” to say hi. Our trips to the beach are full of love and full of tradition. We’ve had the exact same menu for all 14 years. Family favorites. “Thanksgiving dinner” on Sunday night, when we arrive, lovingly brought by Maureen’s sister, Dominique, her husband, Paul and their family. The kids and I continue to make “honey chicken” on Tuesday night, a recipe handed down from Maureen’s grandmother, her mom’s mom. And, on Wednesday night, we go to Tacky Jacks at the end of the spit that is Ft. Morgan. Our grand group of over 20 family, along with friends, the Deakins, gather and go out for dinner, the one night in the week we don’t cook at the beach house.

And, on Wednesday night, as I was looking at my photos from 2014, the last summer Maureen was with us physically, I came across a photo that moved me to my soul and literally made me shake. For those with an iPhone, you know that if you push the buttons the “wrong” way, you can unexpectedly take a screen shot of whatever you are looking at and make it a photo. I had one of those. For several months, I had a picture on my iPhone screen of the kids and Maureen in New Orleans from January of 2014. We had gone to run a half marathon in honor of a little boy, Kethan, along with his mom, Sumi, and other friends (Kethan passed from the side effects of his treatments for leukemia in the summer of 2013). The picture was taken at the same post in Jackson Square where I had taken a solo picture of Maureen 25 years earlier in 1989, on our first date weekend outside of Chicago where we had met.

If you look closely at this picture, you will see why I shook. The photo was captured 3 years ago today, 7.31. If you look more closely, you will see the time it was taken, 10:21. 3 months before I awoke on 10.21.2014 next to my beautiful bride and faced the horrible task of telling her mom and dad, her sisters, our kids the terrible news of Maureen’s passing, here was a photo that until the night of Tacky Jacks this past week I didn’t even know existed. I share this because I believe it symbolizes the incredible power of love. Almost 3 years after Maureen’s passing, her love endures, and she still finds ways to stop by and say hi.

I am provoked because being provoked flows from love. I could be angry with cancer like I am right now as I think about Lori and too many other beautiful women like her. But, as my #IHaveBeenProvoked series makes clear, hate flows from anger, and nothing good comes from hate. It is my love for Maureen that drives all that I do; it is the love of so many for Lori; the love of so many for Jody; the love of so many for names that we do not know that must provoke us. Let’s replace the metastasis of cancer with the metastasis of love and put the scourge of this disease behind us once and for all.