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Kanter Health | The Joseph H. Kanter Family Foundation is a non-profit organization located in Los Angeles, CA, Miami, FL, and Washington, DC. We are working toward a National Health Outcomes Research Data Sharing Network, to empower patients and clinicians, and help citizens of America, and the World, make better-informed treatment decisions. We will know “what works best in every disease”.
Save a Life. It May be Your Own!
Kanter Health | The Joseph H. Kanter Family Foundation (KFF), is a nonprofit patient activist organization founded by Mr. Kanter, aims to effectuate a health system that leverages the power of health information technology (HIT) and electronic health records (EHRs) to learn from real-world patient experiences by putting patients at its center. KFF envisions a health system in which EHRs enable us to capture patients’ experiences over time with the health system. In this vision, it will ultimately be possible to aggregate and query anonymous data from millions of EHRs so that we can learn from the collective experiences of millions of patients, to empower all of us to make better, more informed health decisions. The research derived from this data will not replace clinicians’ medical expertise derived from years of training and experience, nor will it replace findings from randomized clinical trial studies or any other resource available to patients today. Rather, it will serve as a complement; one more tool that will enable medical researchers to conduct research in novel ways on real-world datasets of unprecedented scale, and that will empower patients and their clinicians to collaboratively make better informed personalized medical decisions based on real-world data regarding “what works best” for specific patients and diseases. Patients will ultimately be able to ask which treatments worked best for patients like them in the real world, and utilize this outcomes information to make better informed health decisions. Simply as a byproduct of delivering care, this learning/teaching health system will be able to learn from patients, for the ultimate benefit of patients.
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The magic and potential of EHRs is that they may permit us to capture and learn from the collective experiences of millions of patients with the healthcare system. There are over six and a half billion people living in the world today, all of whom will get sick, virtually all of whom will receive some sort of formal or informal care, and all of whom will eventually die of something. Yet of all of these billions of people and all of the countless billions who lived and died before us, only a small fraction have been empowered, through participation as subjects in randomized clinical trials and other such research, to contribute their personal experiences with health and healthcare to the body of scientific knowledge in the fields of medicine and public health. Through capturing the experiences of millions of patients throughout their lives, EHRs potentially enable a new way for everyone to (anonymously) contribute to this body of knowledge simply as a byproduct of receiving care, while simultaneously empowering each of us to benefit from this collective data to make better informed health decisions.
While other organizations and corporations today are now interested in the concept of learning healthcare, several attributes make KFF unique. KFF is a nonprofit organization founded by a cancer survivor turned patient activist, stemming from his own experiences and frustrations as a patient. As perhaps the longest standing organization dedicated to advocating for a learning health system (for almost two decades), KFF aims to be the voice of patients in effectuating a learning health system, and is likely the only organization approaching the area of outcomes research and learning healthcare from a patient perspective. Whereas other organizations are seeking private gains through learning from millions of EHRs capturing millions of patients’ experiences, KFF envisions the anonymized data and lessons learned from it as a public good, intended to advance the body of medical knowledge from which we can all learn, and intended to ultimately benefit patients and society at large. Effectuating such a learning/teaching health system for the public trust, that current and future generations will be empowered to contribute (their anonymized health data) to and to learn from, is the “legacy” that the Joseph H. Kanter Family Foundation and Health Legacy Partnership aims to leave, for the benefit of society.
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Moving forward requires past knowledge
Anonymously sharing our real-world health data (captured in electronic health records) can save lives. The Joseph H. Kanter Family Foundation and Health Legacy Partnership, a non-profit organization based in Los Angeles, California, is showing the world that using anonymized real-world data via a National Health Outcomes Research Data Sharing Network, to turbo-charge our health system is the key to the cure.
Almost 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. Mr. Kanter built the Kanter Family Foundation and later the Health Legacy Partnership (partnering with the Agency for Healthcare Research and Quality, AHRQ) around effectuating that vision. This vision aims to empower patients, clinicians, and medical researchers through a transformative health system that learns simply as a byproduct of delivering care, leveraging the power of health IT to learn from the collective anonymized) longitudinal experiences of millions of patients captured in millions of electronic health records (EHRs) and other query-able forms of electronic health data.
Personal background
Almost a decade before the healthcare reform debate rose to the forefront of our national consciousness, at a conference sponsored by the Joseph H. Kanter Family Foundation and Health Legacy Partnership (KFF), a prominent physician addressed a fundamental problem that plagues healthcare systems around the world. “It is impossible for me as a physician to deliver good care (and neither can any other physician),” said Robert Brook, M.D., Sc.D., Director of RAND Health and Professor of Medicine at UCLA. “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 $2.5 trillion in annual healthcare spending and affect the lives and health of over 300 million Americans.
The experiences of entrepreneur, philanthropist, and frustrated cancer survivor turned patient activist Joseph H. Kanter, as a septuagenarian 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. While successfully fighting prostate cancer, 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.
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time does not heal all wounds
As many as 4 out of 5 doctors recommendations are anecdotal–not scientifically-based. Congress has passed new laws on health care reform to include billions of dollars to create personal electronic medical records for every individual. Presidents Bush and Obama have issued statements that all citizens should have electronic medical records from birth to death that can be used to collect health outcomes research on “what works best on every disease”.
200,000 lives will be lost this year in the United States as a result of errors in medication.
We can do better. Patients investing in patient sharing is an idea that you can invest in.
There are so many ways to invest in what we’re working to accomplish, but the most important way is by sharing this website with EVERYONE you know. This is an enormous effort, and we just can’t do this alone. The more people involved, the quicker we gain the results needed to help save lives. It could be the life of a friend, a family member, or a loved one… But the truth is, the life you save MAY BE YOUR OWN!
What is needed, now, is a concerted multi-stakeholder effort to put the entire nation on a coordinated forward trajectory.
For those who have a message they would like to create and support our effort with funding to underwrite that message, we have even more opportunities you can choose from. Please become a member to view additional ways you can partner with us below.
We look forward to your participation.
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