Beyond the Ivory Tower: Nuru Noor Breaks Through Bureaucracy to Bring Research to Patients
There's an old maxim that all meaningful change starts with a fresh perspective, and Dr. Nuru Noor is proving its truth. Like many clinicians, Nuru cares deeply about finding new therapies to improve patients' lives. But his personal experience as a caregiver gave Nuru a unique perspective on clinical research, fueling a determination to help improve care for patients by making clinical trials more accessible and aligned to their needs. Coupled with a relentless sense of optimism, these experiences inspired in him a genuine belief that clinical trials of the future can-and will-be better for patients and their families.
To realize this vision, Nuru feels strongly that patients and caregivers should be involved right from the beginning with the design, delivery and dissemination of research. That's why he serves as a representative on the Clinical Trials Transformation Initiative's (CTTI) Steering Committee, playing a pivotal role sharing insights that further CTTI's Transforming Trials 2030 vision, including the area he is most passionate about: making trials patient-centered and easily accessible for all.
Caregiving as a catalyst for change
Nuru's early experience as a caregiver was one of the key motivations for becoming a physician. By helping to provide care to those closest to him, Nuru was exposed early on to the importance of clinical trials. He began to notice a trend: those patients who participated in clinical research received exceptionally detailed and thorough care. He realized that although there is always a benefit-risk consideration with clinical research, participation in trials could offer two massive benefits: 1) potential access to new treatments that are not available in routine healthcare systems and 2) better outcomes and quality of care.
This insight was foundational and encouraged Nuru's belief that the same opportunities should be available to all; namely, the hope that conditions can improve, and that new interventions can be found to enhance the quality of day-to-day life. But Nuru wasn't only motivated by the trials he learned about. The ones that didn't happen were equally compelling.
"My mother was diagnosed with triple-negative breast cancer, which is one of the more challenging types to treat," he said. "Clinical trials offer hope, and yet when she was diagnosed, we were told that the few available treatments were only minimally effective, and no trials were currently taking place at that time for her condition. This kind of disconnect between the options available within the ivory towers versus what real patients and local communities need is a problem that seems to occur time and again."
In relentless pursuit of improved clinical trials
Now, as a clinician based in Cambridge, UK, Nuru is well on his way toward closing that gap. By working within multi-disciplinary teams across a range of projects, Nuru continues to play an active role in helping patients understand and take part in clinical trials. He is currently involved in several projects aimed at making participation in clinical trials easier for patients, including the use of more inclusive language for patients and caregivers. Nuru is also working with a multi-talented team to better understand how to involve patients and caregivers in the conduct of clinical research.
"One area that I am very passionate about is exploring how patients can get more involved in the oversight of clinical trials," said Nuru. "For example, Data and Safety Monitoring Boards rarely have patient members, despite the fact that overseeing patient safety is the main aim of this committee. The clear benefits that patient experiences bring to other committees in clinical trials are well documented, so why aren't patients included? What are the barriers? How can we overcome them?"
Nuru has also worked for several years on an innovative personalized medicine trial in gastroenterology. Personalized trials can be challenging, but they are important because tailoring treatments to individuals might substantially increase the chance for a positive outcome for patients.
"In the recent past, there have been successful personalized medicine trials in the field of cancer," said Nuru. "In these trials, people usually look for things like genetic mutations and whether some people might respond better to one treatment over others. But many other conditions don't have any one specific gene or protein that can be targeted, making personalized trials challenging. However, challenging doesn't mean impossible!"
The clinical trial that Nuru works within has been designed so patients can be identified as being at higher or lower risk based on a simple blood test, with treatment allocated accordingly. He and his study team hope that simple measures like this can help to advance care for patients and ultimately drive better outcomes, including higher quality of life.
Teaming with CTTI for patient centricity
By 2020, Nuru had become increasingly aware of the transformational work being done by CTTI across the clinical trials enterprise. When he saw the announcement for an open patient/caregiver Steering Committee representative position, he quickly seized the opportunity to work with like-minded people toward the goal of improving the quality, efficiency, and patient-centricity of clinical trials.
"Here was an influential organization advocating for all the things I've increasingly recognized: that clinical trials should be delivered in simpler and less bureaucratic ways; that research teams should be sharing lessons and continually learning from one another; and that clinical research should be normalized as part of routine care," said Nuru. "I immediately knew I wanted to be part of CTTI's work, and it has been a real pleasure to play a small part in some of the CTTI projects."
To date, Nuru has actively participated on multiple CTTI project teams, including Trials in Clinical Practice, Novel Endpoint Acceptance, and Engaging Stakeholders in Trial Design.
"CTTI is one of the leading groups in the world helping to reimagine how clinical trials are conducted, and I'm honored to be a part of that effort," said Nuru. "Not only does CTTI understand what transformation needs to look like, but it is also putting in the work to make it happen. I particularly like how the involvement of patients and caregivers is a central and critical part to every project delivered from CTTI."
An impetus for that work is CTTI's bold vision for how clinical trials should be done in the near future: Transforming Trials 2030. CTTI is backing that vision with actionable, evidence-based recommendations, resources, and metrics conceived collaboratively with stakeholders across the clinical trials community.
"In my role with CTTI, I've been amazed by the hard work and enthusiasm of everyone involved," said Nuru. "All members are seeking better solutions to some of the most critical challenges facing clinical research. By 2030, I do believe that many organizations will embrace this vision for more inclusive, less bureaucratic and especially more patient-centered clinical trials."