Data versus Information: CMS, ONC, and the Push for Freer Flow of Data

CMS Administrator Seema Verma made news in healthcare industry circles with her impassioned speech at HIMSS19 regarding data sharing and interoperability. Administrator Verma touted the accomplishments of CMS in this arena, including Blue Button 2.9 and Medicare claims data being made available to 40 million beneficiaries. Verma went on to propose that commercial payer take CMS lead by sharing health claims data and other important information electronically with their patients , something that may become a requirement if proposed rules are adopted.

Interoperability, Health Information Exchange (HIE), and data sharing appear to be the hot topics making news at HIMSS19. Additional announcements included the long-awaited 21st Century Cures Act data-blocking guidance from the ONC. All this focus on exchanging data and providing more patient access begs the question of what is really meant by ‘data’ and how in practice the increased access to it will really empower patients.

The words ‘data’ and ‘information’ are often used interchangeably but the distinction matters insofar as utility. Merriam Webster defines Data as (1) factual information (such as measurements or statistics) used as a basis for reasoning, discussion, or calculation, (2) information in digital form that can be transmitted or processed , and (3) information output by a sensing device or organ that includes both useful and irrelevant or redundant information and must be processed to be meaningful. Alternatively, Merriam Webster defines Information as (1) the communication or reception of knowledge or intelligence and (2) knowledge obtained from investigation, study, or instruction.

The definitions matter with respect to assertions regarding patient access/empowering patients and EHRs, interoperability, and HIE because pure data alone is not particularly useful to patients; whereas information (by definition) is useful. EHRs contain both codified data and unstructured data. The unstructured data, generally found in narrative format reports like office visit notes, consultations, and discharge summaries provide useful information to patients because the author (physician or APP) had synthesized all the data (lab values, vitals, radiology studies etc.) into a summary of findings, care interventions, and with diagnosis that conveys meaning, all in a human-readable format. While it’s admirable that CMS has made claims data accessible to beneficiaries, what is the utility? A professional claim form has 33 boxes, most of the entries are codes. Is this useful to the average patient? Or does it simply meet #3 in Merriam Webster’s definition of data- useful and irrelevant that must be processed to be meaningful.

All ONC certified EHR technology that met Meaningful Use criteria must be capable of exchanging certain minimum elements of codified data and diagnostic test results. CMS has touted accomplishments around unleashing data, and the ONC has issued proposed guidance around data blocking. From data, information should (eventually) flow. Perhaps it is the first step to get somewhere actually ‘meaningful’ as the HITECH Act framers intended?