Understanding the patient perspective: Critical for improving participation in clinical research

Judith Ng-Cashin, M.D.
Chief Scientific Officer, INC Research
September 21, 2016

I am excited about our upcoming "Inspiring Hope" Ideathon. It’s wonderful to see the enthusiasm for and commitment to raising clinical trial awareness. At INC Research, central to our mission to improve global health is connecting patients and physicians to the right clinical trials that fit their medical needs and scientific interests. However, despite this energy and enthusiasm, much work needs to be done to educate patients about clinical research and without their participation, new therapies cannot be brought forward.

In an effort to understand this better, INC Research collaborated with Industry Standard Research, a pharmaceutical market research firm, to gain first-hand insights into clinical trial participation from Rheumatoid Arthritis (RA) patients as a contemporary example. RA is an auto-immune disease that affects more than 1.5 million people in the United States. There is significant medical need for new therapies and many biopharmaceutical companies are investing in R&D to address this. Understanding patient factors affecting awareness of and participation in clinical trials is critical to advancing these research programs. This RA study was designed to address this in the wider context of patients’ overall health and engagement with the process. The aim was to gain a better understanding from a patient perspective in order for CROs and drug developers to design clinical trials that are more responsive to patients’ needs. 

In a two-part quantitative and qualitative study, ISR solicited input from more than 400 RA patients across the globe to capture their perspectives on everything from their experience living with RA and the diagnosis pathway, to their views on clinical trials, motivations and experiences.

Although this research study was focused on RA, the insights found can be easily applied to clinical trials in any therapeutic area. Here’s what we found:

1.     Awareness needs to start at the physician: patient interface

Sixty percent of patients said the main reason they had not enrolled in a clinical trial was because their physician had not discussed the possibility with them. In the five countries included in the study (UK, U.S., Thailand, Mexico, and Poland), our research showed that lack of awareness is a significant barrier to enrollment, more so than unwillingness to participate. Greater emphasis from treating physicians on driving awareness of clinical trials could make a significant impact on patient participation.

2.     Empowering patients is a compelling recruitment message

Framing clinical trial participation as a proactive patient decision is vital to patient recruitment. For example, 82 percent of all patients found messages around the value of patient “empowerment” to be most effective. This was reinforced by the finding that 80 percent of patients responded well to the idea that enrolling in a clinical trial contributes positively to feeling“in control” of their disease. Helping patients understand their own role in the clinical trial process is critical to supporting enrollment.

3.     Education is key to maintaining patient motivation

Motives for enrolling, such as altruism, desire for better quality of life, and taking more control of treatment need to be reinforced continuously during the trial, both with the patients themselves and their physicians. This can be achieved by providing balanced information on the trial benefits, limitations and intended impact. The RA study highlights the importance of understanding patients’ perspectives, needs and motivators in engaging them as partners in clinical research. This patient-centered perspective must be factored into the design and management of clinical trials. By giving patients a stake in the research early on, they can become not only clinical trial participants, but also advocates.

Learn more about the how the “Inspiring Hope” Ideathon is creating more awareness of clinical trials at www.inspiring-hope-ideathon.com. For more information on our RA capabilities visit the INC Research website.