It’s Time to Acknowledge the Power of Self-Monitoring and Patient-Reported Outcomes in Medication Management

Can we afford to overlook the insights from individuals who diligently log their medication use and disease progression? In one of my many roles, the one as a design researcher, I've spoken with numerous patients managing chronic conditions. Their stories underscore the value of discussing treatment progress and making informed decisions with healthcare providers. Yet, the means to efficiently gather and share this critical data remain underutilized. Why is this the case?

First, traditional surveys often fail to capture what truly matters to patients. Medical research discussions sometimes limit patient-reported outcomes to standardised questionnaires, which may not address patients' actual concerns or the full impact of their treatment. The lack of immediate feedback or clarity on how this data benefits them also discourages participation.

Second, there's noticeable skepticism among healthcare professionals regarding the accuracy of patients' manual reports of medication intake. Some providers even suspect patients of logging data to obtain more expensive drugs. While outliers exist, it's unlikely that the majority would fabricate their reports.

Successfully collecting reliable patient data is a design challenge that can be met with dedication and an in-depth understanding of human behavior and the brain's reward system (more about that in an upcoming article). Trustworthy patient-reported outcomes, including medication usage, hold significant economic value. Consider the following real-world example based on an anonymous user of a self-monitoring tool, visualized in the accompanying image:

The graph marks a medication switch at day 0. Looking back 14 days, an expensive medication ($70,000/year per patient) appears ineffective against pain. This visualization doesn't specify how long the patient had been on this medication, but assuming months pass between visits, we can infer the duration of inefficacy. Shortly after switching to a more affordable medication ($10,000/year per patient), a notable improvement in pain levels emerges. Promptly identifying the need for such switches can enhance quality of life and save healthcare resources.

I urge healthcare professionals, designers, technologists, and policymakers to invest in useful digital tools that enable patient-reported outcomes and self-monitoring. The benefits of these tools are too significant to ignore; they offer personalized care, support value-based models, and most importantly, empower patients in their healthcare journey.