I Have Been Provoked | Putting the Gloves Back On

Illinoise - Sufjan StevensIt is a cool and beautiful morning in Austin, Texas. I am sitting at my favorite coffee shop, Teo’s. As I drove into town with my youngest daughter, the light was crisp. It had the orange hues of the approaching fall. As the sun came up, you could see the hints of this orange light touching the highest parts of the trees, glinting off of the leaves. As I write, I am listening to an album by Sufjan Stevens. One of its songs, Chicago (track 9), was dancing through my ears as this light was dancing on my eyes. I’ve never heard this song before I heard it this morning on KUT, but it is perfect.

It is perfect because I met the love of my life, Maureen, in Chicago. As we approach the two year anniversary of her passing, Teo’s is important for another reason. It faces Seton Hospital. I look up, and I see the room in which Maureen and I spent her last day of life. I look up at 7 North and see where I held her hand and kissed her good night for the last time on the night of October 20, 2014. She has left earth, but I know she has not left me or the kids. Mornings like this morning, songs like Chicago from Sufjan, are her little ways of saying hello. While my eyes and my ears delight in this glorious Austin morning, my heart leaps just thinking about every day that Maureen and I had together on earth. Love remains our connection, just like it was what bound us together here on earth.

For those that follow my writing, you know I have several themes. From The Love of My Life to the Powdered Donut Manifestos to I Have Been Provoked, there are patterns to my words. These patterns extend beyond my personal writing to my professional blog, The End of Linearity. One of my themes there is the People Geography of Healthcare. This People Geography theme evolved out of Maureen and my journey through her fight with breast cancer. However, I don’t think “fight” is the right word. Cancer never had a chance. As I have written before, cancer attacks the body, not the soul. Cancer may have been lurking in her body for 11 years, after she was diagnosed in late 2003, but it never stood a chance. Maureen lived life each and every day. She inspires me to this day, and our journeys to MD Anderson Cancer Center inspired my work to “Reweave the Fabric of the Internet to Transform Humanity,” something I spoke about at TEDxAustin in 2011. Maureen was in the audience. I told her of my love for her from the stage.

TEDxAustin - MaureenAs I thought about the title to this post, I was torn between the People Geography series and I Have Been Provoked. I settled on I Have Been Provoked because why I do my work is as important as what I do. Watching the TEDxAustin talk will give you a glimpse into my vision, but why I do this work matters even more. You see I love people. I loved Maureen more than any other, but I care deeply for all people. I went into sales and marketing at Apple, where I met Maureen in Chicago, because it was the best way for me to meet lots of people. I also met lots of people as I sat in waiting rooms with Maureen, at oncologists, at hospitals, at infusion centers, at cancer centers, like MD Anderson Cancer Center, like Lurie Cancer Center at Northwestern Memorial Hospital. I have met lots of people through twitter communities, like #bcsm (breast cancer social media), like #gyncsm (gynecological social media), like Beyond the Pink Moon where I have met many “lovelies.”

What do the people in each of these places and in each of these communities have in common? Cancer? No. What they share is a common humanity in the midst of the toughest fight of their lives. In the midst of the darkness, they shine light. Just like Maureen, they are not defined by their disease. Do each of their cancers have some difficult to pronounce Latin name. You bet, but their God-given names are easy to pronounce: Alicia, Nicki, Christina and so many, many others. These wonderful people are why I Have Been Provoked. It would have been easy to write about the People Geography of Healthcare because this is National Health IT Week, and conferences like Health 2.0 in San Francisco are bringing together technology leaders to discuss the best ways to connect patients (people) with each other and with the best possible care.

However, as I watch and engage the tweet streams, something struck me. Everybody talks about being patient-centric, but everybody starts the conversation from their own silo. Whether it is communities like Smart Patients or PatientsLikeMe or companies like Flatiron Health with its oncology technology or standards fights around “interoperability” between electronic health records, they all start from where they sit, not where the patient sits. They each are doing good work, and I believe are doing good work motivated by a real passion to make a difference for patients, for people. However, what if instead of patient-centric, we had patient-built? Each of these silos and tools are incredibly useful. Crafted by caring and brilliant founders. Yet, they are still silos. What if they could be woven together, with the patient as the thread that creates the broader digital fabric of information they each need for their journey?

Any one who has been through the oncology ecosystem, fighting for their life, just like Maureen and I and so many others, knows how complex the journey is. There is no “one” silo or “one” tool that manages it all. From trying to get scans from one doctor to the next, from reentering your insurance information at each and every provider, from scanning the Internet to find people who are experiencing exactly what you are, it gets complex and complicated fast.

I have “put my gloves back on,” because the work of CLOUD – Consortium for Local Ownership and Use of Data – which I spoke about at TEDxAustin is designed to empower people, and by extension empower all the amazing tools and communities to do more, too. It is all in how we see the problem. It is all in how we think about the user experience. It is about where we start. I start with people. I start with love. I start with Maureen. I start with the orange hues in the trees. I start in Chicago. Where we end up is up to us. Each of us has today, and I Have Been Provoked.


If you have been provoked, too, join us on the journey. Put your gloves on. As I said at the end of my TEDx talk, we want to build this future with you. To be patient-built, we must be patient-supported. If you want to join us on the journey to this future, we are now making our GoFundMe public. You can learn more here.  We are raising funds to build out the CLOUD organization, file for non-profit 501(c)(6) status, and maintain our momentum, ahead of larger commitments from industry, foundations and other organizations. Together, we can advance this future for not only healthcare and the fight with cancer but transform privacy, security, identity and data across many industries.

 

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