As a prostate cancer patient a decade and a half ago, I saw firsthand how a healthcare system unable to learn from patients' collective real-world health experiences and to inform decisions based on real-world scientific evidence of what works best for every patient for every disease is a key root cause of what ails our healthcare system. I came to the recognition that sharing is the key to the cure.
Every one of us has been or will be a patient. Yet the vast majority of us will take lessons that could be learned from our health experiences to our graves with us when we die; nobody else will benefit from what we went through, and we will not benefit from what others have been through.
That concept, today known as a Learning Health System (LHS) that grew out of my vision and my frustrations. Many millennia ago, humankind invented writing, and that changed everything. The LHS vision promises to do for healthcare no less than the invention of writing did for human civilization; to enable us to record and learn from our collective experiences so that future generations can pick up where previous ones leave off.
Since my diagnosis with prostate cancer, I have been working with multiple and diverse stakeholders across the healthcare and health arenas to realize a national-scale LHS. I hope that one day, no other patient ever has to make a life or death treatment decision in an information vacuum.
I wrote this book to share my story and to share this vision for the future of healthcare and health with anyone who has been or will be a patient or caregiver -- which is everyone. It affects everyone's life and everyone's health. I hope this book inspires everyone who reads it to join this national (and ultimately international) movement to all work together to give the gift of health to our children and our nation.
Just as the Internet will never be finished, neither will the LHS. Its potential to empower every individual with shared and actionable data, information, and knowledge that can improve healthcare and health are limited only by human creativity and imagination. As a result, the book will never be finished -- it will be continually updated as this important work continues and advances in ways we cannot yet even begin to imagine.
2. What is the important message your book leaves with readers with? The five key messages are:
a. Many clinicians' treatment recommendations to patients are not based on objective scientific outcomes data; in fact the data does not presently exist, on a sufficient scale, for a patient to be able to ask, "based on the real-world experiences of (millions of) other patients, which treatment is likely to work best for a patient like me?"
b. Even with all of the advances in medical knowledge and technology, in certain respects, the practice of medicine has not changed much since Babylonian times - many of the most important lessons learnable from experiences of clinicians and patients live in isolated silos and die with them; we now have an opportunity (and an urgent need) to change that.
c. My story is one of a self-made entrepreneur who rose from rags to riches in part because every business decision I ever made was data driven; I developed a vision building on my frustrations as a prostate cancer patient that sharing derived from our real-world health experiences could be the key to the cure.
d. Much can be learned from real-world, observational data as documented historically in this book; with current investments in health information technology (IT) that will enable the digital capture of health experiences over time, we have the potential to turbo-charge such learning.
e. This book proposes a Learning Health System (LHS) that will, for the first time in history, leverage the potential of anonymized data captured in Electronic Health Records (EHRs) as a byproduct of delivering care to enable us to learn from the collective anonymized experiences of millions of patients over time; unlocking the power of researchers, public health professionals, clinicians, and patients alike to improve health, save lives, protect the public's health, revolutionize biomedical research, redefine our patient experience, and transform our health system.
3. What were the rewards and challenges of writing your book? In writing the book, I aspired to tell my story, to explain the LHS vision, to support everything with comprehensive and authoritative resource from numerous and diverse sources, and to do so in a way that would be understandable to a reader who hasn't spent over a decade and a half immersed in the healthcare and health IT arenas. I found it incredibly challenging to do all of these things, and to try to do so in an informative yet engaging way.
Also, in this arena, things change so fast, it has been challenging to constantly try to keep up. At times it feels like by the time I integrate a particular news item or piece of research into the book, some new update has come out. That is part of the reason this book will never be finalized. There will be subsequent drafts that continue to incorporate new developments in and contributions by multiple and diverse stakeholders to this ever-evolving work.
The greatest reward I could hope for would be that this book will inspire its readers to get involved in this growing national (and ultimately international) movement to collaboratively realize an LHS. Anyone can be involved in this movement -- and in fact, many must participate for this vision to become a reality in which we all can share.
4. How can we improve the healthcare system? Two of the least well utilized resources in healthcare and health are patients ourselves (every one of us will be a patient) and lessons learnable from our collective health experiences over time. Leveraging the power of sharing and the capabilities of health IT as keys to unlocking the potential of individuals to better utilize these resources holds the promise of transforming our health system. The LHS concept aims to do just that and more...
5. Is ObamaCare good for the nation? Yes. Several presidents prior to Obama have wanted to pass overall care and insurance for our entire population. Obama succeeded. A Learning Health System will change much of Obama Care because we will produce scientific data on what works best in every disease.
As I began pondering my nuanced answer to this question, something profound hit me. It's likely that any appraisal I offer vis-a-vis the Patient Protection and Affordable Care Act of 2010 (PPACA) would potentially alienate a third or more of people reading -- and could bring an undesired partisan twist to my efforts aimed at improving health. From the time I first began working to transform our health system over a decade and a half ago, I have aspired to make Health Care Bi Partisan. It is important and many projects take 10 years or more. Politics have no place in Health Care.
At times when the two political parties seem to be able to agree on very little, former Democrat Senate Majority Leaders (including George Mitchell) and former Republican Senate Majority Leaders (including Bob Dole and Bill Frist) have been engaged with and contributed invaluably to efforts aimed at realizing a national-scale LHS. More recently, my foundation sponsored an historic Learning Health System Summit in Washington, DC. A former National Coordinator for Health IT under a Democrat administration and one under a Republican administration served together on the Planning Committee and stood together on stage at The National Press Club for the first time.
My sincere hope is that the national movement to realize an LHS will continue to include individuals and organizations across the political spectrum, as well as multiple and diverse stakeholders. An LHS cannot be realized by any one organization, any one stakeholder group, or for that matter, any one political party. It can transform healthcare and health for current and future generations, but getting there requires us to work together to give the gift of health to our children and our nation.
6. Why is the use and promotion of electronic medical records such an important tool to help develop better medical treatment for patients? Digitally captured health data (as well as information and knowledge) for all types of purposes, in a number of forms -- including Electronic Health Records (EHRs) -- serves as an essential foundation for enabling the type of sharing and learning envisioned by an LHS. The Federal Health IT Strategic Plan: 2011-2015 does an excellent job of representing how we can build from such a foundation toward achieving a pinnacle goal of rapid learning. It is our collective job to build on and harmonize efforts underway into a national-scale LHS -- collaboratively realizing this vision.
7. What action steps would you like consumers and citizen advocates to take to achieve better health care? Read the book, seek to be more empowered, and join the movement. Anyone can get involved and everyone should participate. None of us can realize this transformative vision for the future of healthcare and health alone. Together we can, together we must, and together we will!