Patient Experiences Are Important

The health care industry has been talking a lot about patient centricity lately, but no one is completely sure what it means. Is it enough to use language that is accessible at, say, a 4th-grade reading level?  Should our goal be to help patients have “better” conversations with their physicians? Is it about arming patient advocates with up-to-date information about clinical updates or treatment access? Giving a voice in the regulatory process?

I am coming to those answers the hard way. This week, I received word that my mother’s advanced breast cancer has spread to her spine. With my years of experience doing communications in the oncology space, it’s too easy for me to again skip ahead as her prognosis continues to worsen, reciting statistics and listing off treatments and investigational compounds in the pipeline to extend her life as long as possible.

After all, that’s what the industry has been built to do: prioritize survival and determine, as often as possible, what the objective “best” course of action is.

So I must make a concerted effort to think not about Kaplan-Meier curves, but what is actually important to my mom, the person, not the diagnosis. That has meant weighing the impact of every move not only on the tumor burden, but also her severe mental illness, which includes debilitating anxiety, bipolar mood swings, and, at times, delusions.

In short, we’ve spent a lot of time talking about quality of life, a phrase that has historically been pooh-poohed as “soft endpoints” that were either subjective, unimportant or unreliable. The good news is that the tide is changing. This is in part because patients have been empowered, both by the flood of information available to them, as well as the financial realities of insurance plans that often force tough decisions into families.

The Food and Drug Administration is calling for more patient input and more latitude in reviewing quality of life and patient-reported data, and even drug-pricing watchdogs are incorporating patient input to determine whether those whose lives are on the line see “value” differently than the economists. Not surprisingly: they do.

As a health care communicator, it’s my job to help define those endpoints and give voice to those experiences, and my personal travels through the health care system have given that undertaking much, much more meaning. The next generation of health care, despite the increasingly precision of our science and our medications, will be far more complicated because patient centricity—matching treatments with patients, not with diagnoses—will not be a buzzword, it will be reality. And we all need to be ready to make that happen.

Emily Poe
Emily Poe