The need for the patient perspective in clinical trial recruitment
Christine Crandall, Head of Strategic Clinical Planning and GlaxoSmithKline offers insight on how we can solve the communication problem present in patient recruitment
The only way to get medicines to market is to put them through a clinical trial. But while the industry invests substantially in setting up the perfect trial it often struggles to secure the most crucial aspect of a trial, the patients.
Christine Crandall, Head of Strategic Clinical Planning at GlaxoSmithKline, currently leads Transcelerate’s Clinical Research Access & Information Exchange initiative. The team aim to help the industry better inform patients by facilitating improved touchpoints to offer information about clinical research and specific clinical trial opportunities.
Through ongoing research across the clinical trial ecosystem, the team have uncovered two core reasons behind the challenge of finding the right patients. Firstly, many prospective patients struggle to find trials they are interested in. Then, if they cross that hurdle, they have to find a trial taking place near to them.
Patients are struggling to find trials that interest them and are geographically convenient
On the surface, it may seem that the solution rests on higher investments in advertising and virtual trial technology. While these are both important resources, Crandall believes that the industry is missing a simple trick that could make a substantial difference.
Put simply, science has a communication problem and we need to solve it.
Trial information is freely available in the public domain, but as Crandall explains, “it’s often very scientific”. The goal is to attract everyday patients, but Crandall points that these documents tend to be written for the scientific community and driven from the perspective of pharmaceutical companies sharing information.
“It’s not easy for our patients to fully understand the key points of the trial.” Science has a communication problem and we need to solve it.
In Crandall’s opinion, the core problem is that the documents use “language that is far from patient-friendly, so it’s not easy for our patients to fully understand the key points of the trial”. It is unlikely that a patient is going to be willing to sign up to a trial they cannot understand; what the study is about, what the trial intends to measure, what the time commitment is and what treatment they may receive?
Crandall explains that even those working within the pharmaceutical industry can struggle to understand this information. If faced with an unfamiliar disease profile, you are left trying to break down highly complex information. As Crandall highlights, when a scientist has to struggle to make sense of trial information, it will be far more difficult for a patient to decipher what they are signing up for.
It’s not surprising then that patients are finding it hard to find relevant trials and understand what is needed from them. Even if a pharmaceutical company invested substantial resources into information sharing about the trail, if they do not get the language right it will fail to connect.
Crandall believes that it is time we approach trial information with the patient in mind. This requires a shift in mind-set from ‘this is all about the science’, towards ‘this is all about the patient’. She points out, that “of course, it is about the science, but what we need to do is teach people about the science and how they can engage with it, so we can actually bring new medicines to the patients faster”.
By adapting scientific language to be more inclusive, the industry can engage with more easily engage with patients and build meaningful dialogues.
Consent documents are always written in sixth-grade language, yet this focus on making documents understandable to patients isn’t being carried across the full trial. There may have been a big push in the industry to involve patients within clinical trial design, but it is time to adopt their language as well as their ideas.
Patients need to know what the clinical research is really about and how to evaluate whether this is the right trial for them. By adapting language to be more inclusive, the industry could engage with patients earlier and build more meaningful relationships. This could result in better recruitment, retention and compliance across all trials. Crandall understands that this is a shift in how things have always been done. As she explains, “this is more of a relationship-building exercise than we’ve ever had before and requires us to be more of a trusted industry”.
But it is a task worth following through on. Crandall highlights that most companies “want the people who participate in trials to feel like they’re bringing forward the future and enabling potential cures and medicine to help others”. If your patients can’t understand the starting conversations, it’s unlikely that they will follow you on this long journey. Without patients, all of this time and effort across discovery and development will fail to materialize. If the industry hopes to connect on a patient level, it’s clear that they need to take a break from scientific complexity and look back to their sixth-grade science class.