Respecting patient privacy, and HIE, to improve the healthcare system

By Arien Malec
10:09 AM

Every day seems to bring a news article that sets up a false dichotomy of information exchange: We can use data to improve the delivery of patient care, or provide the highest levels of patient choice and participation in information sharing, but we can't deliver both. This has also been posed as the equally false dichotomy between "opt-in" versus "opt-out" forms of patient consent.

I believe that the premise that sets up both false dichotomies is wrong and with more knowledge we, the patients, can better understand the context for information exchange.  Patients can then enable "meaningful consent" for data sharing that allows delivery of excellent care while respecting our preferences for information sharing that is sensitive to the different contexts in which our data is shared to improve our care.

I’ve developed a series of posts to discuss the dichotomy around information exchange, describe an approach to resolve the dichotomy, and outline a concrete approach to meaningful choice in support of improved care delivery.

Many providers and health information technology (HIT) proponents often frame the benefits of health information exchange (HIE) in terms of providing safer and more effective care, reducing the cost of care by reducing duplicative testing, and enabling a "total patient" view that allows care practitioners to help patients manage their health proactively rather than manage episodes of care reactively. Some patient privacy advocates focus on the risks of health information exchange, namely that my data may be disclosed without my permission to someone who seeks to use that data in ways that I do not approve. The proponents of information exchange note that a presumption of consent improves care delivery; while privacy advocates note that a policy of explicitly collecting consent for each use of health data minimizes risk of harm.

In addition to these seemingly opposing approaches to data sharing, there's another worry: "consent" can be obtained in a way that undermines the very nature of consent. The notion of "meaningful choice" underscores this problem:

  • So-called "opt-in" consent models, where patients must be explicitly asked for consent to share information can be coercive if, for instance, the consent must be granted to receive basic services unrelated with the data sharing (e.g, if one must opt-in to receive an annual physical or if the consent to provide information for improving care also combines consent to provide information to be sold) or if the consent is buried in legalese or presented as a routine activity (for example as part of a notice of privacy practices that is routinely presented to patients)
  • So-called "opt-out" consent models, where patients are presumed to want to share unless they decline consent, can be highly privacy protective, if patients are clearly explained their options and presented with the opportunity to opt-out. Unfortunately, walking patients through their options takes time which could be additive to already pressed office staff and patients or could add cost to an already costly system."

So this is the conundrum: We want the benefits of strong information sharing to inform care, we want to respect patient choices for data sharing, and we want to preserve patient control over data sharing without adding time or cost to the system. It is this conundrum that often sets up the dichotomy I noted earlier: either improved care delivery or presumed respect for patient choice, but not both. In the next post in this series, I'll describe how the notion of the context for exchange can help reduce the choice burden on patients and providers in my next post.

This article originally appeared on the RelayHealth company blog.

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