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.