A different perspective on clinical studies
Every day I brush my teeth. It’s so routine I don’t give much thought to how I do it. But what happens when I try brushing with the opposite hand? I have to learn how to brush my teeth all over again. Sometimes doing something from a different perspective helps us see things we couldn’t see before.
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.
Thankfully, this mindset of co-creation has gained strong momentum at UCB and globally over the past several years and there are many industry-wide efforts centered around patient engagement and patient centricity including the Clinical Trials Transformation Initiative (CTTI), Innovative Medicines Initiative (IMI), Patient Focused Medicines Development (PFMD), and the TransCelerate collaboration, just to name a few.
At UCB, we operate under a patient value strategy. Everything we do begins with the question: How will this create value for patients living with severe diseases? We are committed to learning from and with patients, using those insights to drive our science, to ultimately find solutions we can deliver to patients.
We partner with patients at various points across the clinical development continuum. Examples include:
- Creating patient and caregiver advisory boards resulting in improved study design, patient engagement planning and patient-centric strategy development
- Collaborating on recruitment approaches and study material design, leading to patient-approved and tailored messaging
- 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
- Collaborating with patients and a non-profit organization on the creation of lay summaries resulting in a new, patient-approved lay summary template for UCB studies moving forward
- Conducting disease-specific focus groups and interviews leading to targeted patient recruitment messaging, awareness of specific social networks, and identification of logistical barriers to 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.
Recently we asked a woman living with psoriasis and psoriatic arthritis to share her personal story with our study team. She spoke about how she had parked in a handicapped spot when she went to her doctor’s office and some passerby yelled at her saying, “you’re not handicapped.” The challenge with her illness is that it’s not something you can always visibly see, but every step she took hurt because of her joint pain.
For study team members to hear that story, it put the patient’s experience into context. Every point of contact with the patient is important. When someone comes to our clinic, we might think about reimbursing them for parking or enable them to park closer to the office, but what else can we do to ensure they feel supported and have the best possible experience? Anything we can do to empower patients and reduce their burden while participating in our clinical studies moves the needle.
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.