This following guest post is an Excerpt from Joseph H. Kanter’s new book “Your Life, Your Health: Share Your Health Data Electronically – It May Save Your Life” © 2012.
Apple frequently runs advertising campaigns for its various devices, showcasing a few of the available apps (more than five hundred thousand for the iPhone alone).
The company has even trademarked the slogan, “There’s an app for that.”
Developers have created apps that let users get driving directions informed by real-time traffic and weather conditions, conduct their banking securely and instantly, and monitor their homes (even turn off lights and adjust thermostats) from anywhere in the world—all from devices that fi t in the palms of their hands.
I find it mind-boggling that, with all these technological advances, there are still virtually no apps to address the greatest challenges I faced as a prostate cancer patient almost two decades ago.
From my own experiences as a patient, it amazes me that it is impossible to ask the seemingly straightforward question, “Among all the patients’ similar to me—with similar demographic characteristics and similar comorbidities—how many have had good outcomes with treatment option A versus treatment option B versus treatment option C?”
There is presently no app to empower a clinician, much less a patient, to ask such a question and then to leverage the collective experiences of millions of other patients in an objective, data-driven manner in order to make a better informed decision.
As an eighty-eight-year-old with grandchildren, I find myself thinking more and more about my legacy. One legacy I’d like to be able to leave—for myself and my family, for every one of the more than seven billion people alive today, and for all those future generations that will come after us—is, quite simply, a recorded history of my health and healthcare experiences. I want future generations to be able to learn from my experiences and the experiences of others. I would not want a researcher to simply be able to pull my health record and associate it with my name, but if my identity is kept private, I am more than willing to share my data for medical research purposes; various studies have demonstrated that a majority of Americans share this same view.
I often wonder how it is possible that technology is available to enrich just about every other aspect of our lives, and yet so little is available to enrich the experience of being a patient, especially one facing life-or-death decisions.
Why is it that a professor of computer science I know—who owned an Apple Newton personal digital assistant over a decade before the iPhone was released, and who controls just about every aspect of his life electronically—still fills prescriptions his doctor writes for him the old-fashioned way?
Why is it that a two-year-old boy I know has learned to work the YouTube app on his father’s iPhone in order to select and stream his favorite Sesame Street videos on demand, yet his medical records are a fragmented mess of paper scattered across pediatricians’ and specialists’ offices in the two states where his divorced parents respectively reside, rendering it difficult for either parent or any clinician to have a complete picture of this boy’s medical history readily available when decisions need to be made?
Patient-focused HIT holds the promise of leveling the playing field by empowering patients to be more engaged in their own care and less likely to be the subject of anecdotal medicine that places them in the lab as unwilling human guinea pigs.
All these factors taken together point to the inevitable conclusion that our healthcare system is facing a crisis, and so are many other healthcare systems around the globe. Our health system is still “dumb”—physicians (many of whom tend to be quite smart and dedicated) like Dr. Brook (and patients like me) still lack the data they desire to make informed decisions. Our healthcare system continues to fail to tap into the power of patients themselves, and it also still fails to learn from patients’ collective experiences.
Our nation’s two greatest causes of mortality—heart disease and cancer—together, kill more than one million Americans per year, yet we are not empowered to share what we can learn from these deaths to save other lives in the future. At the same time, over the next several years, our nation is poised to spend billions of dollars on comparative effectiveness research (CER) and potentially over $150 billion dollars (federal and private) on electronic health records (EHRs) and HIT. Yet we are set to spend these funds in the absence of a framework that would allow us to assemble all the puzzle pieces in a way that will lay the foundation for a treasure trove of anonymized real-world data that can lead to faster cures, more effective treatments, better informed decisions, and more empowered medical researchers, clinicians, and patients. Furthermore, we need to learn from the mistakes of other countries around the globe, where HIT efforts have not achieved the desired results, resulting in the necessity of revamping those countries’ plans. Failing to learn from these mistakes would likely mean that we are doomed to repeat them, but taking their lessons to heart may allow us to build something as a model for the world that no other nation on earth has achieved.
As President John Fitzgerald Kennedy once said, “When written in Chinese, the word ‘crisis’ is composed of two characters—one represents danger, and the other represents opportunity.” I believe that today’s crisis presents us with an incredible opportunity for the United States to step up to fill a much-needed role in leading the world toward a new model of healthcare, thereby ushering in a brave new world. I aim to underscore the urgency of the need for such leadership and to present a bold vision for the future of healthcare—one that I have spent most of the past two decades advocating to effectuate.
Your Life, Your Health: Share Your Health Data Electronically – It May Save Your Life is available in either ebook or hardback formats.
The author, Joseph H. Kanter is a successful self-made businessman and leader of philanthropic efforts throughout the United States as well as a longtime supporter of efforts to improve public health. Founder and chairman of the Joseph H. Kanter Family Foundation, he was born in Tarrant, Alabama. He fought for our country in World War II. After working to construct housing for his fellow veterans, he ultimately built successful businesses in new town construction, real estate development, banking, and movie production. He lives in Miami, Florida, and maintains a second home in Los Angeles, California.