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When Good Patient Engagement Goes Bad

flying cadeuciiThe rush to implement patient portals to meet Meaningful Use Stage 2 deadlines has focused most attention on getting the technology up and running, and convincing patients and providers to move to shared communication online. Hospitals and health systems have implemented portals with the help of incentives from the 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act,   and patients and providers have been migrating to them at a slow but steady pace.

I am one of the patients eager to see this move to transparency, and have been a user of my health system’s portal from the start. But I’m far from a happy customer and my experience leaves me scratching my head. Sure, I can get online without a problem, and I can read my results.

Recently, I read online that my results were “probably benign (not cancer)” and it would be important to follow up with retesting in six months. This news, delivered with no phone call or follow up from the hospital or my primary care provider, was disconcerting. The specter of cancer was anxiety producing, as it would be for many, especially with no clinical context for interpreting my test results.

I never received human follow up. When finally I reached someone at the hospital to set up an appointment for a retest, I asked about the portal and the message and was referred to the hospital IT Department. Hmmm…I wondered. What does this mean? Is this what patient engagement is all about?Continue reading…