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?

Don’t get me wrong, I’m a great advocate for Meaningful Use and for empowering patients with information, even when that information is difficult and not what we want to hear.  But “meaningful” does not mean using impersonal, digital communication like email and patient portals as an alternative to patient-provider relationships, personal communications and trust that form the core of patient-centered care. We need to dig deeper, we need to do better than this for patients.

It was the intent of Meaningful Use Stage 2 to enhance patient and family engagement with providers, and implementation and use of patient portals is an important component of this approach. So far, the focus has been on getting the IT up and running. But let’s not forget content and context—and how we use the technology to advance patient-provider communication.

Next up is Stage 3 Meaningful Use. Stage 3 is expected to include a starring role for patient portals, with a focus on self-management and shared management of health care, as patients use the portal as a tool for interactive communications with providers about their health.

Patient portals can be a great tool to promote transparency, empower patients, and promote shared decision making. But let’s get it right. Providers and patients need to work through new approaches to communication that incorporate portals and other digital technologies, focusing not just on the mode of communication but on what and how communications are being delivered if improved engagement, understanding, outcomes and patient-centeredness are truly to be achieved. Let’s keep the meaning in meaningful use.

Holly Korda is a healthcare consultant and a principal at Health Systems Research Associates, in Portland, Maine.