Patient Engagement

In healthcare, “patient engagement” is a highly desirable and sought-after goal of providers, payers, startups and, contrary to popular belief, most patients. Why then is it so elusive?

If we are considering patients with chronic conditions, our research and work on non-adherence to oral chemotherapy suggests that the most important barriers to engagement lie not with the patient, but with the actions and technical capabilities of the patient’s provider. To understand the problem of engagement, we need to assess the shortcomings of the information technology that providers are using to work with patients.

Patient engagement has been defined by Leonard Kish as:

“Attention, followed by an exchange of information that leads to decisions and actions toward better health and/or patient-defined goals.”

Let’s apply this definition to self-administered chemotherapy, where up to half of patients fail to take their medicines as directed on a consistent basis.

The close to 50% that fail, is their attention elsewhere? Are they un-interested in fulfilling their side of the bargain — e.g., taking their meds? I don’t think so; in fact, our evidence says the opposite is true.

When our clinic customers ask their oral chemotherapy patients if they will take steps, including downloading an app or signing up for a text-messaging channel of reminders and two-way communications to reinforce their medication schedules, an astounding 93 out of 100 say yes.

This indicates that providers do have patients’ attention. At least they start with attention.

The serious barrier to cancer patient engagement occurs during the second element in Kish’s definition: the ‘exchange of information’ which follows attention, as the self-aware patient taps the provider with a question or issue.

The vast majority of cancer centers and clinics — even world-class centers — are simply not set up for an ongoing exchange of patient-specific information with patients once they leave the encounter. The architecture for information exchange between visits is still very crude: a ‘patient education session’ (a one-shot deal), and the telephone: a clunky, time-consuming instrument that is very out of place in today’s mobile and web-based world.

Consider this example of an attempted information exchange by an engaged cancer patient. It is a synthesis of several messages we have seen on our asynchronous patient-provider communication platform:

• “I understand that I am to take the chemotherapy at the same time each day, and I have been doing that for the past six months, but my timezone is going to be temporarily flipped upside-down for a week because of a business trip I’m taking to Asia. So, do I set an alarm and take my medication in the middle of the night? Do I ignore the same-time-each-day rule for the duration of the trip? What do I do?”

If we want engaged patients, we have to help providers be able to answer real questions like that in a timely, no-fail manner. And we have to first of all be able to capture those questions, not let them be lost or never really surface from the patient’s mind, because there’s too much friction in the way of getting it across the transom.

As the patient, think of handling that question about the business trip through the clinic’s phone tree or receptionist. Is that a message you want to enunciate to a receptionist, have him/her write down, and pass on while you wait for a call back that may or may not come? Will you even get a call back? How many times are you willing to try calling, before you give up?

With the telephone comes telephone culture, which is the opposite of the customer service culture we are accustomed to on the mature web. Amazon doesn’t take hand-transcribed compliant calls or inquiries. They use software to assign tickets to customer issues, they give the tickets IDs, and they track the IDs from conception to resolution. Healthcare can’t do that yet — it needs to switch over from telephone to digital communications, first. It needs a way to give rise to patient issues in a natively digital format, so software can run protectively in the background.

Finally, the telephone is only one dimension of the problem on the provider side. Another is, what if the question or issue does get through, and it is in front of the nurse, pharmacist, medical assistant or other physician ‘extender’ whose role it is to resolve such issues? What then?

• “I’m on Xeloda. I’m always very tired. What do I do?”

The problem here is simply one of cost. Answering that question should be easy and routine, but it is not.

There are many steps the professional must take to find an evidence-based answer for that Xeloda patient. Has that patient reported similar side effects before? What advice did we give her the last time, and how did she fare with that? Which disease is she taking Xeloda for (there are several indications for that drug)? How long has she been on it? All these variables, and more — all of which are documented somewhere in the EHR — are inputs to the answering process. When each of those variables requires a separate search in a separate folder or sub-folder of the EHR, and then the nurse pharmacist must still do a separate look up in the side effects management textbook, set of .pdfs, etc… this is too much to do for every patient, every issue, every side effect. It is too expensive.

That logjam between the physician ‘extender’ and the information sought by the self-aware, engaged patient, discourages all parties from surfacing and answering questions like that in a routine fashion. That leads to even more costs, inconvenience, and poor experience down the line.

We need to move away from the understandable but lopsided bias of focusing exclusively on the patient when looking at patient engagement. We need to look at the provider too, and the technology that providers use to do work related to patient communications. The nurse, pharmacist, extender have been invisible for too long as an end-user of technology and in serious discussions and efforts around engagement.