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.

7 replies »

  1. Thank you for the contribution into the patient engagement agenda! Going beyond tactics, we also could use the public realm of the medical website for patient engagement strategy. Providing patients with personalized messages, relevant services and targeted content, we allow them to have a tailored user experience.
    Moreover, we build credibility and trust on the stage of website visit, which is a solid background for the lasting relations between a patient and caregiver. At ScienceSoft, we’ve contributed to this topic, you are welcome to check out our new article on medical website design: https://www.scnsoft.com/medical-website-design

  2. The main purpose of the implementation of meaningful use of EHR is to provide better healthcare service to patients. However, it seems that a lack of patient-healthcare provider communication has now become another hurdle for good patient engagement. While it’s true that healthcare organizations should use hi-technologies to improve health care, the sense of good patient engagement should not be lost by being totally reliant on technology. Above all, communication between real people is still the major source of comfort and security for patients.

  3. One can call the doctor-patient relationship whatever one wants but shoving heaps of information on patients without context in the name of consumer sovereignty is essentially an abrogation of a physician’s duty.

  4. Sigh. Do we have to keep using the term engagement? Partnership and collaboration are so much better.

    I say forget about driving true engagement. Go for driving true patient-clinician collaboration.

  5. This issue has been around for years. The issue is simply that most healthcare organizations simply slapped up a patient portal to ck-off the MU stage 2 requirement with exceedingly few thinking about how a patient may use the portal and how a clinician and patient, together may use the portal to advance shared care goals.

    We have quite a long ways to go as our recent report on Clinical Patient Engagement revealed. My WAG, 3yrs at best but more like 5-7 yrs before healthcare orgs really start building the processes around patient portals to drive true engagement.

  6. I strongly believe that the point of our work as clinicians is to effectively partner with our patients, in order to work towards mutually agreed on health goals. I’ve assumed that part of the point of meaningful use is to nudge us all towards using our EHRs and portals for this purpose.

    It’s true that if we improve a patient’s access to their results but we don’t embed that in a framework that allows the communication and followup, we won’t be partnering as well with our patients as we should.

    I think we need to find better ways to motivate and facilitate the partnership we think should be going on. Obviously the current approach based on promoting “patient engagement” and meaningful use is not enough.

    It doesn’t help that patient engagement is a vague term that’s been used for anything and everything related to more communication and involvement with patients. It’s even a passive construction, so you can’t tell who is engaging the patient, much less to what ends.

  7. This is where we have to be very careful with mandated provisions to healthcare. Typically in the past, physicians would call or have patients come in to the office to discuss results face to face. This is so we can explain in layperson’s terms what “probably benign” means, or what are major or minor variations in bloodwork, Xrays, or scans, and what the results mean for the patient.
    Now we have mandated that patients should receive reports through portals without really looking at the consequences of how the patient will understand
    these results. This is why it’s so important to weigh all the consequences when making rules or regulations in transfer of medical information, to patients, insurance companies and other providers.
    We need to face the fact that some information needs to be imparted and discussed, not just put on a portal