On December 2, we were joined by Jim St. Clair, Executive Director of Linux Foundation Public Health, who discussed his work with the Patient ID Now Coalition, a wide range of healthcare stakeholders committed to advancing through legislation and regulations a nationwide strategy to address patient identification.

As Jim explained, the coalition organized to advocate for the removal of Section 510 of the Labor-HHS Appropriations bill (originally passed in 1997), which currently prohibits the US Department of Health and Human Services from spending any federal dollars to promulgate or adopt a national patient identifier. Beyond advocating for the removal of this important section, the coalition is “to provide a framework of key issues and considerations to guide ONC in policy-making.”

Jim underscored the urgency of the issue, and the need for a national strategy for improved patient identification standards and practices. As Jim said, “A Boeing 737-worth of people die every day because of poorly maintained patient data. We as a country need to dig into what’s acceptable.” 

Jim also made it clear that though the Patient ID Now Coalition is aiming for a national strategy, the discussion applies to our coalition as well. As he said, “If you replace ‘national strategy’ with ‘California strategy,’ the discussion is similar to the consumer principles” we have put forward as a coalition.” 

“The fact is,” Jim continued, “all identity is local, but at the same time, no state is on its own. Even if California improves patient ID on a state level, how is California talking to Nevada? Or to Oregon?” 

Viewed through that lens, Jim continued, breaking the vision for a national (or California) strategy into core elements: 

• Accurate identification and match rates. The strategy should improve matching rates, provide guidance on the process of matching and how error rates are calculated, identify performance measures, align with NIST guidelines, and develop and conduct training on patient ID and matching.

• Privacy. The strategy should leverage resources to help address privacy issues, allow patient privacy preferences to evolve, improve patients’ ability to understand their privacy options, support anonymity, safeguard patient data, be able to restore a patient’s privacy, and safeguard patients’ identity when health information is shared amongst providers.

• Security. The strategy should support each principle of the CIA triad (confidentiality, integrity, availability), mitigate fraud, and encourage HIPAA-covered entities to document where and how health information is being used.

• Integration with current systems. The strategy should easily integrate with as many current systems as possible, enable each integrated system to improve performance, and consider resources needed for healthcare organizations to adopt the strategy. 

• Standardization. The strategy should define the minimum standardized data set needed for patient ID, encourage collaboration with industry-based efforts, encourage a standardized format for data, be compatible with existing principles, and provide guidance on standardization of data capture. 

• Equity and inclusion. The strategy should be culturally sensitive, take into account disparate digital access and literacy, be easy to understand, be language independent, support all patients, support caregivers, and be universally accessible. (Jim underscored this cultural issue, and how important it is that patient data be mutable, to account for a patient’s shifting gender identity, for example).

• Portability and interoperability. The strategy should provide maximum achievable accuracy, and provide guidance on ensuring semantic integrity across systems.

• Data quality. The strategy should consider fundamental data integrity processes, provide the opportunity for patients to self-correct, be designed to minimize errors, provide guidance on how to recover easily from errors, and consider speedy solutions. 
• Sustainability and governance. The strategy should have adequate funding for the creation and implementation of a national approach to address patient ID, preclude cost-shifting onto patients, be designed to serve the US healthcare system in perpetuity, and have governance that is transparent and accountable.

These core principles of a strategy––be it at a national level, or a California-wide level––square easily with many of our own, especially valuing patient privacy, data standardization and quality, governance, and sustainability. It’s clear that the path forward for a national strategy for patient ID runs through California. 

But for now, Jim said, we’re in a “crawl, walk, run” process towards achieving every value above––and right now are very much in the crawl stage. Looking at it another way, Jim said, “We need to move from the Model T to the Corvette.” Correcting himself, he noted we may be before even a Model T in our current patient ID standards, “more like the early-type Mercedes that ran on steam,” as Jim said. 

In closing, Jim boiled the process of improving patient ID into three steps: principles → IT architecture → educating people and encouraging widespread use. We couldn’t agree more, and are proud to have solidified our principles, which the DxF Stakeholder Advisory Group is using to chart its path forward.