VA over-disclosure of EHR data highlights difficulty in managing fine-grained consent

In its Monthly Report to Congress On Data Incidents for the month of September (the exact time period noted on the report is August 30 – October 3, 2010), the Department of Veterans Affairs (VA) describes an incident in which an active duty member of the Army was determined to be ineligible for deployment based on information contained in a “progress note” recorded at a previous time by a doctor working at a Veterans’ Center where the soldier had been treated. The contents of the progress note were apparently available to doctors at Fort Benning (where the soldier was preparing to deploy), despite the fact that no authorization had been given for the release of the Vet Center information the Department of Defense (DoD). While the specifics of the treatment record were not described, it appears from the incident summary that the information from the Vet Center was transmitted from the VA’s VistA electronic health record (EHR) system to the AHLTA system used by the DoD as a matter of routine procedure, but that the specific information in the progress note should not have been included in the health information transferred from the VA to the DoD. VA Chief Information Officer Roger Baker is cited in an article on the incident as believing that the progress note contents were shared incorrectly because the full contents of the progress note (apparently recorded as a free-text field) aren’t scanned to determine if there is any sensitive information in them for which explicit consent must be obtained prior to disclosure.

The VA is investigating this incident to try to determine exactly how the information in question was transmitted, and whether the fact that it was constitutes a violation of HIPAA or any other relevant health data privacy statutes. The privacy and confidentiality of several specific types of treatment data (including treatment for drug or alcohol abuse and for diseases like HIV and sickle cell anemia) in veteran medical records is protected under 38 U.S.C. §7331, although in general the restrictions on disclosure here do not apply to government “components furnishing health care to veterans and the Armed Forces.” Much of the health data transfer between the VA and the DoD occurs automatically as individuals move among different treatment facilities, and through the bi-directional health information exchange (BHIE) DoD doctors are able to view patient data stored in VA systems (and vice-versa), including progress notes. In this case, while the Army doctor at Fort Benning apparently recalled accessing the soldier’s information through AHLTA, a technical analysis suggested that the DoD system did not access the VA records, so some data sharing method other than BHIE may have been involved.

Quite aside from the technical mechanism that allowed this over-disclosure to occur, this incident highlights the difficulties associated with providing fine-grained control over access to and disclosure of information stored in EHRs. Much of the recent debate over consent in health information exchange has been focused on the consent model to be used, such as opt-in or opt-out. In many ways, handling granularity within a consent management approach is much more complicated than the consent model used. A policy analysis on consumer consent options for electronic health information exchange commissioned by the Office of the National Coordinator and published last March describes several different ways in which fine-grained consent might be applied to data in electronic health records. Many of the ways to sub-divide an individual health record according to patient privacy or sensitivity concerns are not easy to implement within existing EHR systems and schemas, and even if granular consent models are implemented in external policy engines, directories, or databases, to be able to incorporate granular consent by data type, provider, or encounter may require parsing and analyzing the entire electronic health record before any health information exchange request can be fulfilled. Similarly, some of the standard schemas and message constructs recommended for use in health information exchange may by default contain more information than is needed to satisfy a given request. The challenge of restricting health data disclosure according to consent directives is made even more challenging by the use of free-text fields within EHR schemas that, as was seemingly the case with the progress note in the recent VA incident, may knowingly or unknowingly contain information that should be subject to disclosure restrictions.

Trust enables, but is not required for, both cooperation and collaboration

There is wide variation on the most effective means to foster or achieve cooperation between organizations, but trust is one of several mechanisms often suggested that can have an enabling effect on cooperation, alone or in the context of related factors such as reciprocity, negotiation, reputation, or a historical relationship based on prior interactions among the parties. Even without specifics as to the precise role trust plays in facilitating cooperative interaction between entities, much of conventional management theory implicitly or explicitly accepts the assertion made by Kenneth Arrow (1974) that “trust is an important lubricant of a social system,” despite its somewhat intangible nature. This wording came to mind when reading a tweet from Jill Wanless during last week’s Collaborative Culture Camp in Ottawa that “Trust is the oil that greases the wheels of collaboration.” During this event, organized by Library and Archives Canada, focused on sharing ideas and fostering discussion on ways in which the government can engender greater levels of collaboration, both within government and between government and the public and other outside entities. True to its name, the event is about collaboration, not about trust, but based on comments and notes from attendees like Tanya Snook, trust is considered to be a prerequisite for collaboration in many contexts.

Much of the empirical research on cooperation makes no assumptions about the presence or absence of trust ex ante, and to the extent that decisions to cooperate are explained in terms of the parties’ self-interest (Axelrod, 1984), institutional incentives to cooperate (Farrell, 2009), or even simply in terms of mutual assurances (Blackburn, 1998), there appears to be little need to introduce trust into the discussion, other than to suggest that repeated cooperative exchanges among two or more parties may, over time, produce trust that may facilitate future interactions. While successful acts of cooperation can often be explained without reliance on trust as a factor, trust can facilitate decisions to cooperate, however, cooperation can and does occur in the absence of (or with insufficient) trust.
 
Collaboration and cooperation are similar concepts, but from the perspective of trust and establishing trust-based relationships, the terms differ in important ways. Collaboration involves the joint effort of two or more parties in order to accomplish or produce something, where each party makes some contribution to the collective outcome. Because successful collaboration depends on everyone doing what they are supposed to do to (or what they commit to do), collaboration often involves cooperation. The contributions made by collaborators may or may not be uniquely provided by the entities that participate in a collaborative activity, so for instance if one party fails to deliver as expected, the intended outcome may still be realized through the compensating action of other parties. Cooperation also involves coordinated, sequential, or reciprocal action by two or more parties, but in general the outcomes sought through cooperation are ones that could not be achieved by one party acting alone. In this way cooperation differs fundamentally from collaboration, in that the failure of one party to a cooperative relationship to fulfill its expectations or obligations typical results in the failure to realize the optimal outcome of the cooperative effort (Axelrod, 1984).

One similarity between collaboration and cooperation, despite the value of trust in enabling collaborative and/or cooperative activities, is that trust is not explicitly required in order for success to occur, at least if sufficient common interests exist for the parties to the relationship in question. Much of the commonly accepted theory on cooperation suggests that outcomes resulting from the pursuit of self-interest are sub-optimal, leaving room for improvement where reciprocal consideration for the interests of the other parties is taken into account. This idea is reflected in scholarly literature and popular management guidance alike, and supported by observations on the role of trust in collaboration by data-quality guru Jim Harris. In collaborative environments both within and across organizations, it seems trust is a powerful enabler, but also something that takes time to develop, sustain, and, where failures against expectations occur, to re-build.

References:

Arrow, K.J. (1974). The limits of organization. New York, NY: W.W. Norton.

Axelrod, R. M. (1984). The evolution of cooperation. New York, NY: Basic Books.

Blackburn, S. (1998). Trust, cooperation, and human psychology. In V. Braithwaite, & M. Levi (Eds.), Trust and governance (pp. 28-45). New York, NY: Russell Sage Foundation.

Farrell, H. (2009). The political economy of trust: Institutions, interests, and inter-firm cooperation in Italy and Germany. Cambridge, England: Cambridge University Press.

Decisions to trust others are both personal and subjective

One of the more challenging aspects of addressing organizational trust (whether between individuals and organizations or between two or more organizations) is the inherent subjectivity involved in determining the trustworthiness of organizations and making decisions to act (or refrain from acting) on the trust one party has in another. Differences in the relative willingness of people to trust seem to derive from a variety of factors, particularly including influences on individuals from family, community, and culture, and from experiences built up over time from interactions with others. Encountering a situation in which someone else exhibits trusting behavior outside the norms we come to expect can bring these differences into sharper focus, as evidenced in a story recounted by my colleague Sara Peters from a recent visit to the island of Iona in western Scotland. It seems while attempting to make a credit card purchase at a local shop that doesn’t accept credit cards, the shop owner offered — absent sufficient cash at hand — to provide a self-addressed envelope to the shoppers so that they could mail the money to her later. This gesture is of course a business decision, but it also reflects a willingness on the part of the shop owner to place her trust in people who are essentially complete strangers to her. This scenario illustrates exactly one of the central characteristics of trusting relationships — whether interpersonal or otherwise — both in the asynchronous nature of the proposed transaction and in the explicit willingness for the truster to make herself vulnerable to the action of the trustee. Historically, there has been some debate about what characteristics of the exchange must be in place in order to invoke trust as opposed to, say, a purely economic or probabilistic calculation comparing potential loss with potential gain. Where the trusting party appears, as in the case of the Iona shop owner, to be chiefly concerned with something other than transaction cost economics, the trust involved goes beyond expectations about another’s intentions, and crosses over into the realm of character, both for the truster and potentially the trustee.

Morton Deutsch considered trust primarily for its role in cooperation and, specifically, the need for trust and trustworthiness between parties to cooperative exchanges, which in Deutsch’s view requires “mutual trust,” particularly because the benefits each party to cooperation receives are not realized at the same time (Deutsch, 1960). The key aspect of trust-based decisions as distinct from other types of decisions where risk or uncertainty exists regarding the outcome is the relative difference between the potential positive and negative outcomes. Deutsch posits that trust is only involved in situations where a party holds an expectation about an event in which the potential detriment if the expectation is not fulfilled is greater than the potential gain if the expectation is met (Deutsch, 1958). In situations where the calculus is reversed, and the upside outweighs the downside, Deutsch characterizes a choice to cooperate as “gambling” rather a decision based on trust, and extends the formulation generally to decisions in the face of risk, in that when a party trusts, the risk of what can be lost is relatively large compared to what can be gained (Deutsch, 1960). Deutsch places the idea of confidence firmly within his conceptions of trust and of risk-taking behavior, repeatedly characterizing for instance the willingness to participate in a given cooperative action as a function of the “confidence that his trust will be fulfilled” (Deutsch, 1958, p. 269). This formulation seems to co-mingle not only trust with confidence, but also trust with expectation.

Francis Fukuyama’s widely read work on trust (1995) focuses on the social and cultural underpinnings of trust, but stresses the importance of trust not only for the overall benefit and sustainment of society, but to enable economic success as well. Fukuyama squarely positions organizations and institutions as embedded in the societal contexts in which they operate, suggesting not only that social norms and cultural characteristics are significant factors influencing the economic performance of these organizations, but that prospects for economic success are predicated on the levels of trust and the factors contributing to its development present in a give society or cultural environment. This explains in part Fukuyama’s belief that declining levels of societal trust and corresponding failure to embrace individual cultural elements that help define a society represent a state of crisis for the United States and other “low-trust” countries (Fukuyama, 1995, pp. 310-311). For many of us, it requires little more than anecdotal evidence to support the idea that “doing the right thing” is more inherent in a given culture or country or community.

References:

Deutsch, M. (1960). The effect of motivational orientation upon trust and suspicion. Human Relations, 13, 123-139.

Deutsch, M. (1958). Trust and suspicion. Journal of Conflict Resolution, 2(4), 265-279.

Fukuyama, F. (1995). Trust: The social virtues and the creation of prosperity. New York, NY: Free Press.

When does technical competence trump historical performance

The joint announcement last week by the Department of Homeland Security (DHS) and the Department of Defense (DoD) to formalize a cooperative relationship between the two agencies to provide coordinated cybersecurity operations to protect government computing networks directs the National Security Agency (NSA) to furnish personnel, equipment, and a variety of support services to DHS. The collaboration between DHS and NSA — and in particular, the NSA’s role in government network monitoring activities given its recent practices of warrantless surveillance — has raised concerns in some circles as to whether the efforts under the joint initiative will be conducted with sufficient consideration and protection of privacy. One response to these concerns sidesteps the privacy issue somewhat as suggests that the technical expertise that the NSA possesses is sufficiently valuable that know-how should trump any lingering worries about safeguarding civil liberties. Leaving the details of the argument aside (and without making a determination of the validity of this argument one way or the other), this line of reasoning can be seen as an exercise in trust, or more specifically, of how to properly assess the trustworthiness of those involved in the joint cybersecurity initiative.

While the NSA’s warrantless electronic surveillance program was halted in 2006 following a federal court ruling that found the program activities to be unconstitutional, the policy and legal debates about the NSA’s actions are far from settled, as the government continues to argue the justification for the program on national security grounds and that federal officials should not be held accountable (a position with which the federal courts have, to date, agreed in holding the activities to be illegal, but disagreed in finding government employees liable). The fact that the legal issues surrounding the NSA’s program remain unresolved (one of the key cases is currently under appeal to the Ninth Circuit Court) with the government persisting in its assertions that individual victims of surveillance shouldn’t be able to present challenges (or even to know the full details of the program) helps explain why the NSA is not widely viewed as trustworthy with respect to looking out for the interests of the citizens the government ostensibly represents and protects. There is little debate over the position the NSA enjoys as the government’s premier agency where cybersecurity matters are concerned, so the implicit argument that goes along with placing trust in the NSA is that its superior technical expertise outweighs any potential misgivings about respecting privacy or otherwise behaving in ways that encapsulate individual interests.

Illustrating different applications of the concept of trust

While the core topic of this blog is managing trust, one recurring theme that serves as a sort of preliminary consideration to trust management is making sense of trust as a fundamental concept and, especially, understanding the differences among the many ways in which the term is applied in general and scholarly usage. The recent appearance of several independent written items — each of which emphasize trust, but with very different perspectives — provides a helpful illustration of some of the more common ways trust is perceived in common usage, including trust in technical competence, trust in the intentions of others, and trust as a moral, cultural, or societal characteristic. These perspectives are often considered together as complementary conceptions, but seem in some cases to compensate for each other, such as when evaluating the trustworthiness of a given entity.

A preliminary challenge to discussing trust at all is arriving at a suitable conception of the term, appropriate for the context and consistent with the prevailing theories on trust and definitions of the word that these theories assign. Definitions of trust vary widely among scholarly treatments of the term and in familiar business usage, leading many authors to characterize a common definition of trust as elusive (Gambetta, 1988; Kramer, 2006). Providing a semantically precise definition of trust can prove especially challenging given the tendency to substitute attributes of organizational trust such as confidence, predictability, or reliability (Mayer, Davis, & Schoorman, 1995; Luhmann, 1988) for trust itself. Trust has been defined as tantamount to placing a bet (Coleman, 1990; Sztompka, 1999); as confidence in the expectation of future actions (Misztal, 1996), whether attributed to a given party as trustee or in society overall (Barber, 1983); or, in the contexts of mutual exchanges, as simply a set of expectations shared by all parties (Zucker, 1986). The terms reliability, confidence, and expectations feature prominently in numerous conceptions of trust, both within and outside organizational contexts, but these definitions offer no insight into the relational nature of trust between truster and trustee, or to the basis of that trust, and so are insufficient to provide workable definitions for trust in any of the disciplines in which the concept is studied. A key distinction articulated repeatedly in research and theories on trust is that risk must be present for trust to exist, and more specifically that trust is the willingness to take risk (Mayer, Davis, & Schoorman, 1995).

If no single definition seems able to satisfy the many contexts in which trust is brought into play, then perhaps multi-faceted presentations of the concept can provide the flexibility lacking in more succinct but ultimately unsatisfactory characterizations. Bernard Barber offers a concise general definition of trust as “expectation of the persistence and fulfillment of the natural and the moral social orders” (1983, p. 9). Beyond this overarching statement, Barber offers two additional definitions that he suggests have more explicatory value in social relationships: first, “trust as the expectation of technically competent role performance,” and second, “the expectation that some others in our social relationships have moral obligations and responsibility to demonstrate a special concern for other’s interests above their own” (Barber, 1983, p. 14). These two themes, separately or together, have been applied in subsequent sociological discussions about trust, including the central aspect of role expectations in Adam Seligman’s examination of trust as an essential public good in modern society (Seligman, 1997). Barber’s multi-part definition of trust is reflected in some popular management literature, such as Reina and Reina’s separation of transactional trust into competence, contractual, and communication dimensions — what the authors respectively term “trust of capability,” “trust of character,” and “trust of disclosure” (2006, p. 14). Concern for the trustor’s interests, which Barber terms “fiduciary obligation” (1983, p. 15) has antecedents in many early organizational management concepts, and occupies a significant position in modern business principles such as principal agent theory and stakeholder theory. Barber’s separate consideration of the performance of a trustee and its motivation for the actions it chooses also broadens the applicability of his conceptions of trust, with the potential to explain the sort of system or institutional trust and its reliance on expert knowledge that Luhmann (1979), among others, set apart from interpersonal trust.

References:

Barber, B. (1983). Logic and the limits of trust. New Brunswick, NJ: Rutgers University Press.

Coleman, J. S. (1990). Foundations of social theory. Cambridge, MA: Belknap Press.

Fukuyama, F. (1995). Trust: The social virtues and the creation of prosperity. New York, NY: Free Press.

Gambetta, D. (1988). Can we trust trust? In D. Gambetta (Ed.), Trust: Making and breaking cooperative relations (pp. 213-237). Oxford, England: Basil Blackwell.

Kramer, R. M. (2006). Organizational trust: Progress and promise in theory and research. In R. M. Kramer (Ed.), Organizational trust (pp. 1-17). Oxford, England: Oxford University Press.

Luhmann, N. (1988). Familiarity, confidence, trust: Problems and alternatives. In D. Gambetta (Ed.), Trust: Making and breaking cooperative relations (pp. 94-107). Oxford, England: Basil Blackwell.

Luhmann, N. (1979). Trust and power: Two works by Niklas Luhmann. Chichester, England: John Wiley.

Mayer, R. C., Davis, J. H., & Schoorman, F. D. (1995). An integrative model of organizational trust. The Academy of Management Review, 20(3), 709-734.

Misztal, B. A. (1996). Trust in modern societies. Cambridge, England: Polity Press.

Reina, D. S., & Reina, M. L. (2006). Trust and betrayal in the workplace (2nd ed.). San Francisco, CA: Berrett-Koehler Publishers.

Seligman, A. B. (1997). The problem of trust. Princeton, NJ: Princeton University Press.

Sztompka, P. (1999). Trust: A sociological theory. Cambridge, England: Cambridge University Press.

Zucker, L. G. (1986). Production of trust: Institutional sources of economic structure, 1840-1920. Research in Organizational Behavior, 8, 53-111.