The Patient as a Person: Using Data to Humanize the Patient Experience

It was almost a year ago. I was walking through Philly’s holiday market, sipping mulled cider and finishing my Christmas shopping, between business flights and train rides up and down the East Coast. I was later stopped going through TSA thanks to a bacon bourbon hot sauce I bought for my dad. Ah, the days of business travel.

Amid my yuletide merriment, I got a call from a colleague. She said her client was seeking a “big idea” for 2020 and she was hoping that our analytics team could brainstorm ways to use data to help. The ask: What would happen if we peeled back the curtain on chronic kidney disease (CKD) and looked at the holistic patient experience, beyond being defined by traditional quality of life measures or creatinine levels? How could we develop a better understanding of the whole person, not just the patient, living with CKD every day?

This question reflects a challenge that many of our clients are grappling with as we hurdle toward “modernized healthcare,” where personalization and consumerization are becoming tablestakes and patients have more access to their own health data and more choice over how they manage their disease. As such, our clients are asking: how do we capture and support the human, lived experience – with a focus on how the burden of disease can impact every facet of a patient’s life? And how can data help us be more precise and thoughtful with our actions?

As an applied sociologist and analyst at W2O, my question is never “can we find answers to these questions?” Rather, my question is “what types of data can we leverage from our robust data engine?” In partnership with a team of smart colleagues – a scientific strategist, a communications specialist, and a seasoned marketer researcher – we developed a three-phase multi-modal approach that aggregated data from a geographically diverse cohort of patients living with CKD. Leveraging social media data, qualitative phone interviews, and an online quantitative patient survey, we created a global CKD-Personal Impact Index (PII) that derived the daily personal impact of the disease on individuals diagnosed with CKD (and their families). The CKD-PII uncovered the direct and indirect impact of living with CKD on patients’ activities of daily living and overall quality of life (QoL), providing unique insights into the patient experience that other studies have not traditionally assessed.

Our research showed the burden of a CKD diagnosis is profound: 56% of patients living with CKD said the disease has an extreme impact on their overall QoL, and 13% said they felt an impact almost immediately post-diagnosis. Mental well-being and sleep schedule were most severely impacted by CKD, followed by planning of life events/holidays/trips, diet/meal management, exercise schedule, and time for medical appointments. These findings were recently presented in a poster session at the American Society of Nephrology’s Kidney Week and are being submitted for presentation at the upcoming World Congress of Nephrology.

But beyond garnering recognition in academia, this research reflects an emerging imperative in the healthcare industry. How do we use data to humanize the patient experience? How do we uncover the real, lived day-to-day burden of disease and its outcomes? If living with CKD results in poorer mental health and running on little sleep, how can we better reach and serve the patient community? In a year where COVID-19 has had mental health implications for many of us, we have gotten a taste of how it feels to have a disease interfere with our day-to-day life. Perhaps we can carry this perspective into the future – leaning a little more into the data and appreciating the whole person behind the patient.

A very special thanks to Jillian Guiglotto and the AstraZeneca CRVM team, who were instrumental in pushing this important work forward.


Learn more about W2O via our About or Healthcare pages.

Mary James
Mary James

Leave a Reply

Your email address will not be published.