In the wake of the HITECH Act of 2009, office-based physician adoption of electronic medical records (EMRs) has nearly doubled as providers have taken advantage of meaningful use incentives. While the trend toward implementation of systems to maintain, manipulate, and share data has been palpable, there is no cohesive code of ethics addressing the issues related to the use of aggregated data. Informatics is by its nature multidisciplinary, and these varied stakeholders are governed by value systems that differ in significant ways.
The resulting IT systems and use cases present ethical challenges including threats to patient autonomy and shared decision-making, the provider-patient relationship, and the Big Data that is leveraged to inform evidence-based medicine. Despite their many benefits, both actual and aspirational, health information technology (HIT) and data science offer no panacea for the ills of our beleaguered healthcare system. In some cases the tech serves to exacerbate old problems, in others new problems spring from the socio-technical sandbox, and ultimately it is the patient who bears the greatest burden.
Many of the issues that we face with the use of HIT result from a battle that has been raging over the soul of healthcare - the clash of values between the business of medicine and the care of the patient. Business is winning the battle - it has been for some time - and it has shaped the development and implementation of information technology in the U.S. healthcare system. Health IT, in current incarnations, tends to look through the vulnerable toward a favorable bottom line.
Depending on who you ask, you will get a different answer as to whether HIT serves the triple aim of efficiency, cost-effectiveness, and improved outcomes in healthcare, but it matters not. The triple aim creates transactions where once there were relationships. And, as frustrations mount so do profits, and the values and dollars have been shifting accordingly. To wit: the base pay of insurance and hospital executives and administrators often outpaces those of surgeons and hospitalists, while medical societies report en masse to the National Coordinator for Health Information Technology thatHIT certification and meaningful use are detrimental to patient safety, security, usability and interoperability. Since stakeholders are guided by different values and professional duties, a cohesive set of ethical guidelines is needed to inform practice for all professionals involved. The following four points provide some of the reasons why.
1. Patients are more than data points
Aggregated data of treatment outcomes do not necessarily reflect the needs of an individual patient and her experience with her health or healthcare provider. The record is a disembodied representation of a patient, who is deconstructed byte by byte without effectively being represented as a whole person. The lament from physicians has been consistent - EHRs and their myriad structured data points do not tell us much about what is happening with a particular patient, and clinical usability leaves much to be desired. The health, wellbeing, and dignity of an individual are not found in the aggregate - they are discovered at the bedside along the course of a provider-patient relationship. While there is an emphasis on patient satisfaction and follow-up to services received, aggregated data does not shape the individual patient experience or reflect the bedside interactions of an individual. Reducing a large population of individuals to a set of data points may create a scenario in which the reality of each individual is lost in the mire of the aggregate.
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