openHealth

This post is an attempt to pull several themes together into a concept I’ve termed “openHealth.” Several months ago I signed “A Declaration of Health Data Rights.” I had some initial misgivings (and still do) because of a sense of incompleteness and necessary ambiguity. Necessary ambiguity because it was a statement pitched to engender widespread endorsements from patient, providers, enterprises, and vendors within healthcare.

The Declarations of Health Data Rights are—we the people:

1. Have the right to our own health data.
2. Have the right to know the source of each health data element.
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form.
4. Have the right to share our health data with others as we see fit.

Right to Access

Although “our own” would seem to imply ownership, it is more a statement about accessing our health data that may actually be owned by others. As written, it is just a restatement of what already exists in healthcare—we have a right to access… Right to access would also suggest that it is not a property right, but a license within the contextual constraints of a relationship. In practice that license provides access to those entities we, as patients, have direct relationship contacts with: providers and insurers. Here I am using insurers broadly to include all third–party payers for healthcare services (esp. government). Do we have, and would the license extend, that access to all those that receive our heatlh data (personal health information, PHI) beyond the direct relationship contact’s reach—secondary PHI utilizers (e.g. billers and coders) and secondary data markets.

“Own Health Data” presumes that this is known or knowable in terms of actual breadth and depth. It also presumes that the breadth and depth is both agreed upon and commonly shared. In the wild, these presumptions are just that—presumptions.

Right to Know

There is an implicit presumption that all sources are known or knowable. This is in addition to the presumption that every source knows and can account for every data element on an individual basis. This putative right cuts to a core deficiency in understanding health data rights. We don’t know all those that could be deemed sources, nor do we know at an elemental level even those sources we have knowledge about. The domain space for all source and all elements is uncharted—especially when you consider the vastness of paper within this space.

Right to Possess

There are several presumptions with this putative right, chief of which is the notion of “complete” or “completeness.” Who defines “complete” and what is the agreement process for “completeness?” Is there an arbitration process? What constitutes “without delay” and “minimal cost?” What constitutes a “computable form” or a “computable” state? This right seems so full of presumptions and resulting ambiguities that it could never be implemented beyond the mere declaration phase.

Right to Share

Probably the most straightforward of the declarations; however, it is similarly constrained to the presumption that the data is known or knowable, the limitations imposed by licensed access, and the ambiguities in obtaining a “computable” copy.

Ownership Presumptions

At its core HealthDataRights is fundamentally an attempt to assert rights to access, to know, to possess a copy, and to share PHI. The mere assertions of these rights is suggestive that these rights are explicitly or implicitly held by others—the reason for the declarations to the contrary. How do we create or carve–out these rights from existing rights–holders? Perhaps we need a different stance or starting position—where rights are not declarations against well established ownership interests, but rather a redefining of what constitutes ownership. Such redefined ownership might be described as a fundamental right.

Fundamental Right

Constitutionally, in the United States, fundamental rights are those rights rooted in our nation’s traditions and implied in the concept of ordered liberty. Specifically they are: speech, religion, travel, association, and criminal process. These rights have a property–like nature in that they cannot be taken away without due process of law.

Fundamental rights have been expanded by judicial rulings to include the right to vote and the right to privacy. The right to privacy finds expression in: family living, marriage, sexual choices, education, and choice of reading materials. Presently the collection and distribution of personal data is considered a privacy right, but not afforded the protections of a fundamental right in our society. Is it time to make “collection and distribution of personal data” a fundamental right? And if so, then is the argument that personal health information (PHI) is a property right of the individual advanced?

openHealth

HealthDataRights as declarations of rights may be reformed in terms of declarations of ownership if the collection and distribution of PHI were conceptualized as a fundamental right.

We the people:

1. Define our personal health information as any health information pertaining directly or indirectly to a person.
2. Own our personal health information in whole, in part, and in derivative use.
3. Must contextually authorize use of personal health information in whole, in part, and in derivative use.
4. May contextually share our personal health information with others.

A question that seems ripe for the asking is whether control of PHI should be battles of asserted rights versus an upfront stipulation of ownership, permission–based use, and just moving on down the road. A companion issue that begs addressing is the fact that we (humans/persons) are all patients—we’re actually on the same side. What should be on the opposing side is not providers, insurers, enterprises, etc., but rather technologies, practices, and conceptualizations. If we’re all patients, then the discussion focuses upon how we all benefit from a common vision of PHI.

Tagged as: ehr, government, phr, policy