Until now I have kept my personal and professional life distinct. Since joining Imperial Clinical Research Services, the lines have blurred slightly, for the better. This has been a gradual shift, but one I was now ready to make.
Recently, I was asked to speak at the 7th annual AQC Global Quality Summit in Dublin. Imperial is a member of the Avoca Quality Consortium (AQC), which is part of the Avoca Group. There are several similar network platforms within the industry, and this one works well for Imperial as its presence and reach crosses continents with meetings in the U.S. and also in the U.K. and European region where I am based. Imperial’s key areas of expertise include patient engagement, which is one of the focus points at Avoca, so location and synergy align. I had my first taste of Avoca in 2017, attending as a delegate and joining in a few debates. I was delighted when the Avoca team contacted me in person, and asked me to speak at the 2018 Avoca conference to share my story.
I am a cancer patient.
I was diagnosed in 2013 with melanoma and have experienced the patient’s perspective of diagnosis, treatment, and trials. Driven by my experiences as a patient, I founded and organize an annual conference in the U.K. for melanoma patients and the stakeholders involved in our care. This platform has enabled me to speak to a wide range of patients and professionals and get a full picture of all the challenges faced at all points within the system.
My talk was to take place in the graveyard shift, as the last event of a busy two-day program. I had also been asked to moderate the panel discussion that would follow immediately. My nerves were somewhat running high. I have spoken at patient and medical events before, but this time, the audience would be my peers, clients, and colleagues.
At the point of my diagnosis, options for melanoma patients were very limited, treatment pathways fraught with issues, and discrepancies of care a challenge to navigate. Since then, 10 new drug options have transformed the market, enabling patients to be given survival rates of years rather than the months they were dealt only recently.
Sitting at the front line of innovation is risky. Having no options a far greater risk. So for many patients, access to trials is a matter of life or death.
With improving options and choice bring further dilemmas. Whereas once a patient would embark upon a trial because it was their only option for survival, now a patient has, with the guidance and expertise of their medical team, the opportunity to select from a number of trials. They can choose from options that provide them with the best survival outcomes and also meet their own perspective of value.
To state that all patients are offered this opportunity to pick and choose a trial that meets with needs would be wrong. There are still limited options across all stages. Patients still face time delays in implementing treatments, have a lack of control over their care, and feel disengaged. Some manage significant adverse events that impact on long-term life more than their cancer did.
The life of a patient isn’t easy. The battle with the disease itself only the tip of the iceberg.
Through shaking hands I shared my journey, talking from slide to slide about what drives me as a patient and how this experience has given me a great passion for improving health care and clinical trial options for other patients around me.
Both professionally with Imperial and personally with my own conference, I continually strive to ensure that patients, their needs, and how they are impacted by studies is at the forefront of my mind and the conversations I have with clients.
After my talk at the AQC Global Summit, I joined with a panel of experts to discuss how the future of clinical trials will be affected by patients. My co-panelists included Ken Getz, Dennis Salotti, Jim Lane, and Suzanne Murray. We shared a passion for embracing the evolving role of the patient. Knowledgeable patients is a wonderful ideal – for the industry, and for medical professionals.
It is our duty to ensure that the empowerment of patients is not exclusively a right of those that are technologically adept, those who scored lucky with a postal code lottery that placed them near a center of clinical excellence, or those that are vocal and have the courage to challenge the norm.
Working together in partnership, from the moment the trial is conceived, is the only true way to ensure success and effective patient engagement. When implemented fully, this approach improves recruitment, reduces attrition, and creates the potential for a positive trial experience for patients and sites alike.
It was an honor to share my passion for patient engagement at the Avoca conference. I overcame my nerves about providing such personal details about my life to business colleagues, and proudly shared that I had just only days before passed the five-year milestone I had once held as a turning point in my life.
Survival is a gift. Sharing my patients experience a privilege. If only all patients were as fortunate as I am today.
