Health IT privacy focus turns to patient consent

At last week’s meeting of the ONC Health IT Policy Committee, the Privacy and Security Workgroup reported that it will be focusing in the near term on privacy protections for health information exchange (HIE), including developing recommendations on what the role of consent and consumer preferences should be. The workgroup rightly sees consent and other patient-centric means of controlling the use and disclosure of personal health information as key to engendering trust among patients in electronic health records and health information exchanges of the data that will be stored in those records. The Committee’s NHIN Workgroup has taken up a parallel focus on defining and implementing a trust framework to encourage participation among organizations that would use health information exchanges, particularly including the NHIN. It will be interesting to see if the Committee (or the health IT community in general) can reconcile the organizational-participant and individual-patient perspectives when it comes to privacy and health data sharing.

It shouldn’t be lost on anyone that it is exceedingly difficult to arrive at a common framework of trust when different stakeholders have different goals and priorities for adopting EHRs and exchanging the data those records contain. Many of the anticipated benefits from the interoperable EHRs rely on widespread adoption of health IT and universal (or near-universal) participation among individuals, stemming from President Obama’s January 2009 call for every American to have an electronic health record by 2014. For patients, the key challenge seems to be ensuring sufficient privacy and security protection to give individuals confidence in the EHR systems and the use of their data, to get them to want to have their health records in electronic form at all. Putting patients in control of their data through patient consent mechanisms seems to be the favored way to engender trust among individuals, but in doing so the value of HIE in improving quality of care may be negatively impacted. If consent is enabled at a level of granularity that allows individuals to keep certain portions of their health records hidden, the result for anyone requesting access to those records through HIEs may be incomplete data. Depending on the nature of the data omitted from an ostensibly comprehensive view of a patient, the risk of clinical mistakes due to incomplete records goes up, threatening the improvements in quality of care and reduction in medical errors that electronic health records are intended to produce.

Finding the right balancing point between patient privacy and consent and optimizing the utility of data shared through HIE is more a business and policy problem than it is a technical challenge, although the technical means of enabling granular consent in EHR or supporting health IT systems are far from trivial. Managing consent on the basis of the purpose for which health data is requested might be a more suitable starting point for finding a workable solution to this issue. Such an approach has the advantage of following the requirements of all the major federal privacy laws and being consistent with the Nationwide Privacy and Security Framework that includes the core privacy principles which privacy advocates argue should be directly reflected in the NHIN and in health IT adoption programs like meaningful use.