In this excerpt, Mitch Herndon, Patient Engagement Lead for UCB’s Global Clinical Sciences & Operations, talks about the importance of incorporating the patient perspective into clinical research studies. Read the full article on LinkedIn. 

In the pharmaceutical industry, clinical research studies have been a routine part of our work for decades. These studies usually take place on a global scale with the goal of getting new medications and treatments into the hands of patients to improve their quality of life. Development plans are created, protocols are written, recruitment strategies are implemented, and studies are conducted. Yet, most of that work has often been done without one important perspective: the patient’s.

At UCB, we are focused on what patients value from idea inception through scientific discovery and clinical development and eventually, hopefully, until the solution can benefit them. 
Pausing, and in some cases stopping, to involve patients, to seek their input, to listen, to go beyond empathy, to gain their perspective, and to see the view through their lens can be enlightening and contribute to better study outcomes. For clinical research to improve how it brings value to patients, we need to go beyond solely working for patients to consistently working with them.

A few ways we’ve partnered with patients at various points across the clinical development continuum include:
 

• Creating patient and caregiver advisory boards resulting in improved study design, patient engagement planning and patient-centric strategy development
• Engaging patients to review select protocols, resulting in improved consenting processes, patient-friendly visit scheduling, and identification of training needs for site staff
• Implementing patient experience surveys as a best practice within studies to seek direct input from patients, parents, and caregivers on their thoughts and feelings related to their study participation
• Having patients share their personal stories and experiences at study team kick-off meetings  and investigator meetings resulting in teams having a renewed focus on patients’ daily challenges and burden beyond just the clinical perspective.
   

While viewing clinical research through a patient lens is not yet the norm, we are making progress. There is no finish line; it’s not a race but a journey and one we want to take with patients and their families and caregivers. What better way to do that than to ask, listen, and create – together. Patients and families are impacted by severe chronic diseases every day, and we want to make a positive contribution to bringing them what they value and helping them to live their best lives. That’s what it’s all about.

About the Author
As the Patient Engagement Lead for UCB’s Global Clinical Sciences & Operations, Mitch Herndon leads a global team that provides oversight for patient recruitment and engagement efforts across UCB’s clinical studies. Mitch has 21 years of experience in partnering with and advocating for patients, having worked at a national non-profit patient advocacy organization and a global contract research organization prior to joining UCB.