National Tokenization Mechanism
In this workgroup we are exploring the idea of a National Tokenization Mechanism.
The project has 3 main aims
To provide a resource that captures relevant aspects as a basis for exploring the topic in the primary guidance and legislative documents.
Prepare an abstract and application for the ISPOR meeting in 2022 (link)
Establish a platform for the discussion of a federated tokenization proposal for a national identity verification system (see below)
The information below is for informational purposes.
The content and statements below reflect the majority consensus and contributions from many non-FDA stakeholders, solicited through a public convening. While many have contributed, it is challenging to encompass all viewpoints. We rooted our statement in fact wherever possible and captured our current discussion in a working group where we solicited input. We welcome additional comments via email: digipathalliance@gmail.com
Background
1. Unique Patient identifier (UPI)
A UPI is a single medical identification number, much like a Social Security number (SSN) or some other identification (such as biometrics or smartphones), that is unique to each person and used to organize their medical information. Unlike the commonly used SSN, this identifier would be valid only with regards to health information. It would be devoid of the attachments of SSNs, which are commonly used as identifiers in health care, banking and finance, education, and more.
https://www.healthaffairs.org/do/10.1377/hblog20210701.888615/full/
There is currently no UPI in use for patients in the United States. If a patient has seen more than one health care provider in their lifetime, their health information is unlikely to be stored under any single record number. Rather, each health care system maintains its own identifiers for patients (e.g. medical record number, unit number etc.)
The idea of a UPI is compelling; however, realization requires a carefully constructed approach that can be embraced by all stakeholders
2. Concerns.
The idea of a UPI also raises concerns. It is dangerous to have “all an individual’s health information” linked by a single identifier. Much of this fear is based on concerns stemming from issues around the SSN, but these fears are not transferrable to an identification method used specifically and solely for health data.
https://www.carecloud.com/continuum/national-patient-identifiers-more-harm-than-good/
https://compliancy-group.com/what-is-the-national-patient-identifier-repeal-act/
The question is whether these concerns can be alleviated with appropriate technologies.
3. Appropriations committee decision 2021
While the U.S. House of Representatives removed the ban in its Labor-HHS appropriations bill this summer for the third consecutive year, this is the first time the Senate has taken any action.
on Oct. 19, the U.S. Senate’s Appropriations Committee removed a longstanding prohibition to fund a national patient identifier program.
The wording in the bill is: “…drops prohibition on using funding to develop a unique patient health identifier for each individual’s health information. The longstanding ban has been a barrier for health institutions to reliably share information about patients, and during the COVID-19 pandemic, for health entities to effectively trace contacts and track immunizations.”
Passage of this appropriations bill in the Senate means that the Department of Health and Human Services can get involved in a national strategy to create unique patient identifiers.
The question is what this national strategy could look like.
https://www.icd10monitor.com/senate-votes-to-remove-ban-for-funding-unique-patient-health-identifier
https://www.appropriations.senate.gov/download/lhhs-summary-
4. Other components
Legal exposure, risk mitigation, and consent are some of the other components that will require attention
https://www.hipaajournal.com/privacy-lawsuit-against-uchicago-and-google-dismissed-by-federal-judge/