Many well-meaning patient advocates want patients to become more empowered in their own care, which could take many forms. The technology companies and EMR supporters of course want this to happen electronically. “Smart” cards could contain every detail of a person’s medical history and records. But do patients really want this?
A program called HealthSpace was launched by Britain’s National Health Service in 2007. Features of the technology include the ability to enter personal values such as blood pressure readings, keep track of healthcare appointments, have access to their personal “summary care record”, book appointments, and exchange email messages with their clinicians through a secure link. It was based on a program developed by Kaiser Permanente.
According to the published report of this program, only 0.13% of eligible patients signed up for the “advanced” account, which included more appointment and email access. The researchers found that “…patients perceived HealthSpace as neither useful nor easy to use and its functionality aligned poorly with their expectations and self management practices.”
Like any new e-technology, I suspect the HealthSpace program can be improved. However, its disappointing results speak of a bigger problem. The healthcare industry arrogantly assumes patients want to know every detail of every aspect of their entire lives’ medical history. If it’s important to us in the healthcare fields, it should be just as important to patients. I find that patients often don’t want to know exactly what happened in an operation, nor do they want to constantly measure and record their blood pressures or glucose levels. They don’t want to be constantly reminded they’re sick with chronic diseases.
Many patients would rather think about their imperfect health states only a few times a year when they visit their doctors. Otherwise, they’d much prefer to live their lives as if they had no impediments. A truly patient-centered healthcare system would also respect this wish to not have their medical issues at the forefront of their minds every waking minute.