Are Stakeholders (Still) Undervaluing the Patient Journey?

Sefton Eisenhart
Sefton Eisenhart

When the quest for good clinical data is arduous, researchers and drug developers often contract tunnel vision. Certain endpoints are established and analysis begins, the more objective, the better. But as endpoints become more specific, and researchers arrive at a clearer understanding of what they are looking for, the landscape of information they are relying on shrinks. These blinders are a necessary part of getting a treatment through rigorous approval processes, but the more they block, the more likely they are to miss important insights.

Many companies in the healthcare industry have stated the importance of patient-centricity, but this embrace has still proven to be largely rhetorical. When it comes to the patient voice, it is more likely to be taken into account after a drug has been through clinical trials and approved by FDA and other regulatory agencies, in other words, when a pharmaceutical company is ready to start marketing it.

At TREND Community, we believe that analysis of the patient journey should be the first step in any treatment development. When a stakeholder truly understands the experiences of patients, they can use that knowledge to inform everything from endpoints to trial design. It can also give drug makers a better idea of what kinds of outcomes patients truly want.

When TREND Community does a Community Voice Report or a Data Exploration, we uncover stages of the patient journey that companies might not know about. We also amplify the patient voice in a way that gives all stakeholders a better idea of the collective will of the community. This prevents symptoms from being overlooked, like they were with Prader-Willi Syndrome. When we talk to members of any patient community, they are often shocked and even frustrated that certain treatments are far from any pipeline. Sometimes that is because companies don’t know about the problem.

Other times, there might be a treatment out there, a potential off-label use, but because there is not enough communication between disease communities, or enough analysis of respective patient journeys, the connection is never made.

The patient journey is better acknowledged today than it ever has before, but we still have a long way to go before it gets the attention it deserves. Analysis of the patient journey should be the first step in any instance where a pharma company is going to interface with a patient community. The insights uncovered help lay a better foundation on which to build out everything from trials to endpoints to marketing.