Assessing Patient Experience to Influence Policy

Rigorously assessing the patient experience in a way that enables patients to influence policy is a challenge. I liken the gathering of patient experience data to the formation of planets in our solar system. It may sound strange at first, but the forces that created the nine planets orbiting our sun are like those we use today to assess the patient experience to influence regulatory policy and decision-making.  Let me explain.

The way planets formed around the sun is fascinating.  At the birth of our solar system there was the sun and large clouds of dust and particles orbiting around and banging into each other. Over billions of years, these little particles began to cling together, bumping into even more particles. As they assembled, they gained mass and with mass comes gravity.  With gravity comes the potential to attract more and more particles into the largest objects and the ability to influence objects near and far.  Eventually, these large objects coalesced into the planets we know today, and the gravitational attractions between the sun and planets define the way we live our lives on Earth.

But, how does this relate to the patient experience?  Like those small particles floating in space at the birth of our sun, each individual patient story exists as part of the global patient community.  Each experience, each anecdote, is gravely important to the person for whom it describes their journey. But, when it comes to influencing healthcare policy or regulatory decision-making, one individual story rarely has enough weight to make an impact.  In other words, it doesn’t have enough gravity.  That is why recent efforts to rigorously asses patient experience and risk tolerance are so important. 

Using qualitative and quantitative techniques from epidemiology, health economics, and economic market theory, industry and patient groups are now assessing patient experience in such a way that the assembly of patient stories begins to take on weight.  For example, patient preference studies that assess benefit-risk tolerance are methodologically rigorous and statistically complex, providing a objective analysis of patient’s willingness to tolerate risk and prioritize treatment characteristics.  Similarly, semi-structured qualitative patient interviews can be used to gain in-depth understanding of the patient experience providing valuable information to regulators and product sponsors.  Like our planets forming in the solar system using the laws of physics, patient stories are assembled using rigorous scientific methods to describe the patient experience in a way that has weight and, ultimately, the gravity necessary to influence decision-makers.

Given the recent focus on the patient voice, regulatory agencies are more interested than ever in rigorously conducted patient experience studies that can support patient-centered regulatory policy and decision-making.Industry too should be looking to patient experience to influence medical product development, patient outcomes, and treatment indications. While each patient story has value and meaning, assembled together the combined patient experience has power to influence healthcare policy and medical product development around the world.