Years ago, a seed was planted that eventually became Patients As Partners, an annual conference aimed at truly involving patients in the development of medicines. The seed was this: Greg Simon, a pharmaceutical policy leader later to lead then-Vice President Joe Biden’s cancer moonshot, asked a group of industry leaders when was the last time they thanked their patients for being in a clinical trial.
No hands went up but the moment inspired Patients as Partners, an annual industry event coming to Philadelphia next month on April 28 and 29.
“My immediate thought was that there was an urgent need for a conference on customer service for patients in clinical trials,” conference organizers Valerie Bowling and Kate Woda say on the event’s website.
Last week Bowling and Woda shared a virtual conversation about the upcoming event and noted that the conference has 20 scholarship spots available to patients. They’re looking for patients and their caregivers who have experience participating in clinical trials. The scholarship is also open to patients who have experience in advocacy.
The invitation does not include travel costs, but covers the attendee fee for the two conference days, access to networking and exhibit information, lunch, access to the reception, digital conference related materials and access to post-conference on-demand audio recordings of conference sessions.
The deadline to apply is April 8.
Organizers hope patient attendees will give the industry feedback about how to the design and experience of clinical trials. The Patients As Partners conference is just one of many initiatives underway throughout the industry to educate potential participants about clinical trials, which are carefully constructed studies to determine the safety and efficacy of potential new medicines. Medical breakthroughs would come to a halt without patients who are willing to participate in this critical step in drug development.
For several years, CSL has been active in patient outreach to improve clinical trials and the patient experience. Both Deirdre BeVard, CSL Senior Vice President of R&D Strategic Operations, and Rodney Winley, CSL Senior Director for R&D Patient Partnerships, are on the speakers’ faculty for next month’s Patients As Partners conference.
The company has partnered with organizations, such as the AWARE for All program from the Center for Information and Study on Clinical Research Participation (CISCRP) and Greater Gift’s PopUp Star, to inform patients about how clinical trials work and the opportunity they present for patients.
CSL also has held multiple forums with patients to get their insights about how clinical trials should be designed and carried out. In an address at The Economic Times Global Business Summit on March 12, CSL CEO Paul Perreault emphasized the need to unburden patients of the hassles of being in a clinical trial, such as traveling far distances for lab work and appointments.
“More efficient trials will translate into faster and more data rich developments. That can only be a good thing for the sector, and most importantly, patients,” Perreault said.
