Over two decades ago, inspired by his own frustrations as a prostate cancer patient unable to obtain real world data about which treatment would work best for patients like him, Mr. Kanter developed a vision for a National Health Outcomes Data Sharing Network. Through the participation of many, that concept grew into what today is commonly referred to as the Learning Health System (LHS).
Mr. Kanter established the Joseph H. Kanter Family Foundation (KFF) and later built the Health Legacy Partnership (KFF partnering with the Agency for Healthcare Research and Quality, AHRQ) around effectuating his vision (see link below).
This original vision aimed to empower patients, clinicians, medical researchers, and public health professionals through a transformative health system that learns simply as a byproduct of delivering care, leveraging the power of Health IT and to learn from the collective experiences of millions of patients. This would be captured in electronic health records (EHRs) and other query-able forms of digital health data.
Historically, a decade before the healthcare reform debate rose to the forefront of our National consciousness, during a conference sponsored by the Joseph H. Kanter Family Foundation (KFF) and Health Legacy Partnership, a prominent physician addressed a fundamental problem that plagues healthcare systems around the world. Robert Brook, M.D., Sc.D., Director of RAND Health and Professor of Medicine at UCLA stated “It is impossible for me to provide the information that patients want when they come to see me. It’s absolutely impossible, even though I’d like to do it, as would virtually all physicians. It is also impossible for patients to make good decisions about their care without this kind of information.” In the United States alone, this inability to make good health decisions based on real-world data impacts decisions that allocate over $3 trillion in annual healthcare spending and affect the lives and health of all Americans.
The experiences of entrepreneur, philanthropist, and frustrated cancer survivor turned patient activist Joseph H. Kanter, as a nonagenarian prostate cancer patient almost two decades ago, exemplify the problem Dr. Brook illuminated. Faced with conflicting recommendations from highly trained and experienced specialists across the country, Mr. Kanter found himself frustrated by the lack of real-world outcomes data upon which to base his life-or-death treatment decision. Mr. Kanter studied the area further and ultimately came to learn that some medical professionals believe that most doctors’ recommendations to patients are more likely than not to be based on anecdotal experiences and not on hard scientific evidence. There were even some physicians who referred to the present practice of medicine in this information vacuum as “trial-and-error medicine,” essentially, “experimenting on patients like human guinea pigs.” Since then, Mr. Kanter has worked every day as a patient activist to empower patients to make better informed health decisions.
After many years of advocating for patients’ rights, KFF has been involved in leading many projects and philanthropic ventures to help create a movement toward achieving the Triple Aim of better health and better care at lower costs. In reflection, after many discussions with leaders in the field, sponsoring conferences, brain trusts and think tanks Mr. Kanter realized the work and commitment to his vision is one of the most challenging transformations to realize. But at age 91 he is determined to see it into fruition. His favorite poem shares (see link below) his dedication to persevere.
One of the Foundation’s greatest accomplishments was the sustained outcome catalyzed by the 2012 Learning Health System Summit that was convened in Washington D.C. At the LHS Summit, sponsored by KFF, representatives from over 80 organizations gathered to discuss the accomplishments and further development of the LHS. Joe’s original vision had caught on and was moving in a greater direction than expected. With the support and recognition of many it is now becoming a well known concept called the Learning Health System (LHS). The LHS Summit achieved multi-stakeholder consensus on a set of LHS Core Values that painted a broad strokes vision of this transformative future of health. In turn, the LHS Core Values bonded together an ever-expanding grassroots movement of individuals and organizations spanning the health spectrum who are working together to realize the LHS vision for our nation and our world. The impressive individuals who planned the LHS Summit evolved into the Interim Steering Committee for this Learning Health Community.
Implicit in the LHS Core Values is a shared recognition that the LHS is a transformation of healthcare and health involving technology, policy, people, and culture. The LHS is emergent and adaptive in nature, and too profound and disruptive a transformation for any one organization or sector to realize alone; it can only be achieved (and itself continuously improve) if multiple and diverse stakeholders all work together to realize it. Over several years, this ever-expanding group has done just that, and has actively been spreading the vision of the LHS and its corresponding urgency nationally and globally. In addition to growing and further diversifying the grassroots movement, the Learning Health Community has catalyzed self-organizing initiatives in which participants have volunteered their time and efforts to collaboratively address key pieces of the multi-faceted LHS puzzle.
One testament to the enduring power and magnetism of the LHS concept is the way organizations have enthusiastically endorsed the LHS Core Values and supported the movement in myriad other ways — including some who just a few years ago would be imagined (erroneously) by naysayers to be averse to the disruptive vision. The below links chart the progress in the history of Joe Kanter’s vision and over the two decades of moving the needle slowly in the direction of better health and health care for patients.
Through including the nationwide LHS as its overarching and pinnacle goal of its draft strategic plans for our nation for the coming decade (that even reference the LHS Core Values), the Office of the National Coordinator for Health IT (ONC) has recognized and acknowledged the importance and motivation of acceleration of the LHS will take us to the goal and Joe’s vision for the foundation in the near future. But ONC cannot do it alone; nobody can. We all must work together to give the gift of health to our children and our nation — and to current and future generations across our nation and around the world.
Link: Outcomes Research Brochure (Circa 2005)