Patient Support Needs Patient Input

By Jeff Terkowitz

Here’s a patient support marketing scenario: You’re in charge of creating a patient support program that reaches out past the point of prescription. The drug you’re supporting is a molecule that requires long-term adherence to be effective. You’re looking for end-to-end results.

You’re undoubtedly considering a range of options from nurse follow-up calls to automated text reminders to remote patient monitoring with wearables. Perhaps you need choose between specialty pharmacies or hubs or are involved in creating a training program so specialty pharmacies can provide the best patient support for the product. What kind of patient support will work for your product?

There is an underlying question that is key to success: What kind of patient support works for the patients? Several studies evaluating patient support for chronic conditions show varying levels of patient response.

In a study published this spring1, researchers were trying to find a way to increase patients’ adherence to their oral anticoagulant medication — patients who were at risk for stroke if they didn’t take it. In addition to a smart pill bottle, one group used a patient portal to receive “personalized education,” including tailored text content and topic-specific videos “featuring both health system cardiologists or pharmacists and patients.”1 Sounds good; tailored messaging, multi-platform, remote access. Results?

Overall, although patients may view the information shared in educational messages as useful, they are neutral regarding its impact on their own disease management and health behaviors.1

The tailored educational materials presented in e-format didn’t work. Why? Researchers said the information presented in the videos “was not new to participants.”1 It didn’t engage them enough to change their behavior.
This is exactly the kind of problem that can be prevented by involving patients in the design of a patient support program. A study of 352 chronic patients examining the factors affecting patient engagement and medication adherence found that the engaged and adherent patients were more likely to have a positive relationship with their physician that resulted in their feeling empowered in their own care.2 What’s the implication for a patient support program? Asking the patients what made the difference for them revealed a key influencer and a point of contact. Part of a patient support program for these chronic patients could focus on that opportunity.

But the researchers also found that timing was crucial. The study identified a time in the patient journey when patients did NOT want to be encouraged or empowered: Right after diagnosis.

Activation, therefore, may not be conceived as an ‘on/off’ state; it is determined by the developmental change in the patient’s identity on a complex journey of engagement. At the beginning of the care pathway, in fact, patients may be too overwhelmed and shocked… to be able to assume an active role in the care process.2

Their conclusion implies that the way to engage patients — and how to interest them — changes over the course of the disease journey. What might be off-putting at one stage might be just what’s needed at another. As Sara Holoubek of Luminary Labs said in an MM&M article:

The full journey starts before diagnosis and extends beyond treatment into home and personal life. We’ve only seen so much of that [in patient support] so far.– Sara Holoubek, Luminary Labs3

If the objective is to activate and engage patients with your patient support materials, it makes sense to find out what real patients experience, at all points in the patient journey, as an integral part of the research.

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1 Ahmed R et. al. “Perceptions on Tailored Educational Messaging to Patients with Atrial Fibrillation: Towards Increased Patient Engagement and Medication Adherence,” Heart & Lung, Volume 49, Issue 2, March–April 2020, Page 216

2Graffigna, G. et al. “The role of Patient Health Engagement Model (PHE-model) in affecting patient activation and medication adherence: A structural equation model.” PLoS One. 2017; 12(6): e0179865. doi: 10.1371/journal.pone.0179865

3Dobrow, L. “Are pharma’s patient support services a good fit with patients needs?” MM&M. Sept. 10, 2018.