Patient Centricity: A positive shift for the patient experience

Sponsors’ heightened awareness of the importance of patient engagement in the design and execution of research studies has led to the discovery of crucial information about participation pain points. The information often reveals huge disconnects in what patients prefer and what they experience. Resolving these disconnects can have a significantly positive impact on patient recruitment.

Many wonder whether the patient centricity movement is actually happening or if it is simply discussed more often. A recent study conducted by the Tufts Center for the Study of Drug Development and the Drug Information Association found that three out of four major pharmaceutical companies have piloted and implemented at least one patient advisory board (PAB), making these activities one of the most commonly implemented patient centricity initiatives.

Patient advisory boards are providing many insights to clinical trial sponsors on patient opinion of clinical trials, before, during and post participation. During a March 27 patient engagement webinar held by The Center for Information and Study on Clinical Research Participation (CISCRP), data was presented showing that prior to participation, the number one reason patients did not want to participate in a clinical research study, after reading the informed consent form, was the number of study visits.

During the trial, the top two reported dislikes were the location of the study center and the chance of getting placebo.

Post-participation, the number one piece of information people want to receive is study results including personal results and overall study results. The CISCRP P&I 2017 survey revealed that, while 91% of patients report that receiving trial results are somewhat or very important, over half of those surveyed (53%) reported that they did not receive any reports or updates post-participation. Future studies can use these insights to design more patient-centric studies and improve patient recruitment.

The number of study visits is a major impediment to agreeing to participate in a study.

According to Deloitte, approximately 70% of prospective clinical trial participants live more than two hours away from the nearest study center. New technology can be used to allow for remote visits — some studies can be completely remote.

Spending on technology because of the cost and because not all patient preferences are the same. Weighing the cost of technology because it is preferred by patients is not an easy sell to stakeholders. While some patients would be more willing to join a clinical research study that supported remote visits, others may prefer to have a face-to-face with the principal investigator. Sites also bring their own perspective. Some sites will readily accept innovative technology while others are more comfortable with “business as usual.”

Many sites struggle with patient recruitment. Many strategies are not measured or tracked. It is true that 80% of trials are delayed, and often due to poor recruitment. It is also true that 48% of sites miss their recruitment targets.

It’s harder to get into trials, and the inclusion and exclusion criteria, as a whole, for clinical research studies have increased 61%, which significantly adds to the screen fail rate. Additionally, 15% to 20% of sites never enroll a single patient and actual enrollment timelines are typically double that of planned timelines.

By listening to patients and hearing the hard truths about their experiences, there is a real opportunity to design clinical trials with the patients in mind and increase recruitment.

Until recently, protocols were often designed without patient burden in mind, so it’s of little wonder that patient recruitment suffers. The patient centricity movement and the growing number of PABs being formed is a sure sign there is a positive shift for the patient experience. By engaging patients and listening to what they say we have an opportunity to make large improvements.

Ashley Tointon has more than 20 years of patient recruitment and project management experience supporting clinical trials and the pharmaceutical industry. Currently she provides recruitment expertise, strategy and leadership as Principal Consultant of Accelerate Clinical Enrollment LLC. Email tointon@icloud.com or tweet @AshleyTointon.