Virgil Simons, Founder and President of The Prostate Net, presented on patient-centricity and creating patient advocate partnerships as part of Partnerships in Clinical Trials Digital Week. Watch the full webinar presentation, as well as six other on-demand webinars here.
After being diagnosed with prostate cancer 20 years ago, Simons founded international prostate cancer advocacy organisation The Prostate Net. Ever since he has been working to share information with patients, professionals, families and institutions to 'better manage the disease, to counsel patients on options, and to provide the best opportunities for quality of life'.
In this presentation, Simons explains how patient advocacy today requires a network: 'Being a patient advocate involves being totally in the process of the delivery system, understanding what the system should be doing, and having a voice to determine that does happen.'
Simons explores how it is vital that before running a patient-centric trial, it's important to actually know what patients want from it. Other barriers that need to be overcome are largely due to differing perspectives of the trial from the patient, provider and pharma. Studies show there is often a lack of trust from patients, and physicians needs to turn this round through taking more of a patient-centric approach.
Simons goes on to discuss:
- Are patients more than a revenue stream?
- Engaging patient advocates as part of your marketing strategy
- Patient advocates <=> advocates for pharma
- Patients as your new KOLs
- Creating a new matrix of patient engagement