By LEAH HOUSTON, MD (11)
Like many academic institutions and non-profits these days, the American Medical Association (AMA) decided not long ago to get into the innovation business, launching Health 2047, a new for-profit Silicon Valley-style venture innovation incubator.
One of the AMA’s first new ventures is Akiri, a blockchain-enabled data transmitting and sharing network built to efficiently transmit the data the AMA owns among patients, physicians, and health systems. According to a news brief filed at the time, Akiri’s data transmission network includes health information exchanges, and will allow the personal health records of patients to be transmitted. 
What most people don’t know is that Congress effectively granted the AMA a monopoly on healthcare data back in the sixties.
Here’s how it works. Physicians services are reimbursed under federal programs based on the Current Procedural Terminology (CPT) handbook. Under US law the only legal publisher of the CPT is the AMA, which first published the handbook in 1966. At the time, the CPT handbook was seen as a tool to control and monitor healthcare costs. It was thought that the uniform coding system could be applied to measure healthcare reimbursement and physician activity.
In 1983 the Healthcare Financing Administration (HCFA) was given nonexclusive, royalty-free license to use the AMA generated CPT handbook for that purpose. In exchange, HCFA promised to exclusively use the AMA CPT system for all future procedural nomenclature- effectively giving monopoly rights to the AMA over medical billing and coding. 
Less than 10 years later, the AMA was also given exclusive rights to determine the value of physician’s services through appointments to the Relative Value Unit (RVU) committee; the committee that recommends the prices physicians charge.
In effect the AMA now:
1.) Determines what physicians should be paid and
2.) How physician services will be defined and billed.
The AMA also has a Masterfile containing nearly every physicians’ identifying information.  Through policy, US government essentially gave a private organization bidirectional regulatory capture over the United States healthcare service, billing, coding and payment system.
In 2005 the AMA made over $44 million selling data from its Masterfile, so it makes sense that they would want to start the new Health 2047 venture in order to commercialize that data further.
The blockchain system powered by Akiri appears to be proprietary, closed and permissioned, offering no promised service to the public, despite its government protections through the AMA.
All of this raises important questions:
- Why does one for profit entity have a monopoly on the sharing of data around patient diagnosis and documentation?
- Why are we not taking advantage of blockchain’s true value to decentralize consolidated systems?
Perhaps more concerning is the first collaborative application of the Akiri software will be with Celgene – a biotechnology and pharmaceutical company. This partnership reminds me of the unsavory 1990’s royalty agreement the AMA made with Sunbeam, a private medical device company. The AMA lost a nearly $10 million settlement in 1998 to Sunbeam after being forced to withdraw on the agreement after an outcry from the physician community, who has since further lost trust in the AMA.
Physicians and patients have been persistently voicing concerns against the ongoing corporatization of healthcare, and the protections the government affords to private companies and special interests. There are many private companies who have protections that lead to unforeseen harm; Insurance companies, have protections from antitrust violations under the 1947 McCarran Ferguson act, and third-party administrators who control the supply chain of the pharmaceutical and medical devices were protected under a safe harbor law of 1991.
Both are examples of regulatory policies that continue to protect private companies while obscuring and driving up the price and cost of healthcare.
Health 2047 will likely continue to leverage the exclusive rights the AMA has to further develop and commercialize their government granted-access to healthcare data. The original agreement between HCFA and the AMA was made in 1983, when the AMA was a non-profit, with no for profit ties.
Since then, HIPAA was created (1996) with a goal to create standards for the electronic exchange, privacy and security of health information, and the HITECH act (2009) was applied to coerce physicians to digitize their documentation. Both of these policies have obvious benefits to electronic records companies, but also to organizations with exclusive rights, like the AMA. Corporations benefit, yet patients pay the price, and practicing physicians are faced with the uncompensated administrative burdens that significantly limit their time with patients.
As we see the cost of healthcare rising, I ask:
Why is the US government allowing private corporations to have so much control over a system that has already demonstrated to be expensive and fraught with administrative waste?
With physicians and patients becoming increasingly weary, why does the government continue to impose more regulation on the individual, and more protection for corporations?
We are in the age where data = dollars. When private entities such as the AMA are given exclusive rights to commoditize on our data and the data of our patients it has the potential to do harm. As our healthcare system is digitized and regulations like the 21st Century Cures Act call for new technology to implement data sharing and interoperability, it’s important that we pay attention to private organizations like the AMA who have been granted sweeping rights and protections in the past.
In this new digital health era I ask Congress:
- Why are we mandated to share patient data?
- Who owns, controls, and sells the data that we generate?
These are important questions.
*Disclaimer: this material is a compilation of publicly available information, and represents my opinion on the matter at hand.
1 “Health2047 spinout launches data sharing business, adds blockchain” By Stephanie Baum and Erin Dietsche for Med City News, January 3, 2018
2 Practice Management Information Corp. Petitioner v. American Medical Association Supreme Court Amicus Breif No. 97-1254 October Term 1997
5. AMA -supported startup launches blockchain data sharing network” By Meg Bryant for Health Care Dive, Jan 4, 2018