What Stops Patient Engagement in Clinical Trials

Last week I was invited to speak at Bayer’s Headquarters during their Annual Patient Engagement Meetup. This year I was attending a lot of other similar events thanks to our collaboration with different companies like Boehringer Ingelheim, Merck, Novartis, etc. And the last one really reminded me of:

What Stops Patient Engagement in Clinical Research?

The answer is long and short at the same time. I will give you the short one here in my article and everyone that wants to discuss in more detail is welcome to contact me. In short, there are two main (in fact quite surprising) obstacles pharma companies can not overcome in order to bring better patient engagement at their companies.

No matter how much money they have for new solutions, focus groups and initiatives, unless they focus on solving these two first, I don’t see this industry moving any further to Patient-Centricity.

1. Working in Silos:

Most pharma companies are big corporations, having teams with multiple people all serving one concrete purpose (KPI). Yet, Clinical Research is complicated. It can not be planned and managed piece by piece, as all pieces should work together. You need the scientific perspective as much as the KOL’s opinion, as much as the patients’ interest, etc.

This means that if the R&D team considers only one of these aspects and the Patient Engagement teams consider tother ones and then Clinical Operations third ones, they will all go in different directions.

Most companies started doing these meetups in order to achieve better alignment between teams and avoid silos. One meeting once every three months though can not change the data you are looking for all day long while making important decisions like protocol development, country selection, site identification, patient recruitment. In order to see how these parts fit, you need the big picture every day.

IDEA: What if clinical trial teams work are like different lego parts? Every time you have a new project you build a team of different backgrounds (Feasibility, Clin Ops, Patient Recruitment/ Engagement, Data Management, Regulatory Affairs, etc.) experts to share their perspective and brainstorm how they can all work together.
2. The Company-Centric Approach

When I started FindMeCure together with my partners we had this great vision of how we all partner together to support all patients who apply for clinical trials. Then our first conversations with pharma started and then the question:

Why should we support patients for clinical trials other than ours?

Later on, I saw that most support programs, initiatives, websites, and products are all around the idea of how to boost interest in my company, how to help our company’s patients. Well, let’s start with the fact that patients do not belong to anybody, so you either support patients, or you build a company solution you need to support with an additional budget to get some attention.

IDEA: What if you take a give-first approach? Yes, you will spend some money/time on patients that might choose another company as a provider, but in the end, if you provide quality and meaningful solutions to somebody, they will choose you.

Patient Engagement is not a one-off task, it’s a process, it’s a mission, a decision. If you as a company, team, really want to have the patient in mind in clinical research and improve your results, maybe you should stop doing the things you are doing every time and look for another way. As Einstein said:

“The definition of insanity is doing the same thing, yet expecting different results.”
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