50 Million Patient Heroes
Our Health Data Cooperative
A New Idea
to build a patient owned Learning Health System, that answers the question,
"What treatment works best for my disease?" is a vision that
hopefully we can begin in the US and expand to the world, so no matter what the
income, there are no disparities between people when it comes to their health
It will require 50 Million Patient Heroes working together to share their health data anonymously.
method of a cooperative (we named the entity Our Health Data Cooperative) for
business entity formation of the solution, is a novel one that
overcomes many previous obstacles to health data sharing (which were
brought up in the LHS Summit that was put on by the foundation I was President
of in 2012), namely:
Patient Number identifier (This is accomplished with what the Office of
National Coordinator calls a "clever loophole"). This is the
members' Personal Identificaton Number of Cooperative Members (PINOCM) which
effectively is the member's stock number. This allows each provider of health
services to both share their data anonymously, as well as allows them to search
for data of a patient among other providers anywhere in the US. (This
reduces the administrative costs for the providers, which do not have to pay to
be a member of a health information exhcange, and insures that the information
shared is accurate and for that patient).
Interoperability - overcome with the OHDC technology that allows each patient
to access their data. (The patient is the only legal entity that has rights to
their respective health data regardless of its location. Regardless of
the language the data is stored in, the OHDC app allows us to gather it, and
translate it into a language that each provider is able to understand.
This technology also allows OHDC to gather records in a longitudal manner so
that we can allow Associate Members of OHDC to access and evaluate the data to
see which treatment works best).
Gathering sufficient quantities - 50 Million people are needed in OHDC to
provide valid, non-biased, non-confounded outcomes. OHDC is structured as
a for profit entity. The reason for this is that each member will receive
dividends (called patronage in cooperative lingo) from the profits of OHDC
activities. The revenue streams will come from Data (renting) and Services
(including the unlimited access to a doctor 24/7 for $9.99/month - see attached
of all programs in this price that are included and what we expect to have
ready next week or so as result of winning the RFP).
result of my battle with the rarest form of cancer, which I understand may
affect only 180 patients in the US, I understand better why we need this
system. Here is a link to my book about that journey. http://www.amazon.com/dp/B00S27AUAI
faced with an enormous pushback from the people who run the health industry, as
this "outside the box" solution, which could save 100,000 lives in
the US each year as well as reduce the costs of health care in the US by $400
Billion annually, threatens their revenue models.
Thank you for being a Hero.
Patrick J Grant, Chairman
Our Health Data Cooperative
See How Sharing Health Data Across Silos May Save Thousands of Lives - Even Yours
Art by Regina Holliday