At this week’s Patients as Partners conference in London, members of the biotech industry will turn their attention to the patient experience.
That means hearing from leaders in medicine development who are increasingly focused on how to bring the patient voice to the work they do. And it means hearing from patients themselves. On the agenda are Alfred Samuels, a survivor of metastatic prostate cancer and a prominent patient advocate in the United Kingdom, and Sukhjeen Kaur, founder of the nonprofit Chronically Brown, which represents the South Asian community, particularly those living with both visible and invisible disabilities.
Patients as Partners Europe, which has a counterpart conference in the United States, also offered registration scholarships to 20 patients. The opportunity was made available to patients who previously participated in a clinical trial, which are carefully constructed studies to determine the safety and efficacy of potential new medicines.
Clinical trials are a key area of interest for Patients as Partners attendees as the industry looks for ways to improve trial design and the experience of being part of clinical research. Medical breakthroughs would come to a halt without patients who are willing to participate in this critical step in drug development.
"Through co-creation and actively listening to patients, who are the experts in their disease, the industry can make a meaningful impact on patient lives and public health. This event brings together industry leaders, providers and patients who share a passion for partnership that leads to improvements in drug development,” said Deirdre BeVard, CSL’s Senior Vice President for R&D Strategic Operations, who is co-chairing the London conference from a new vantage point. She’s now based in Europe.
Last year, BeVard interviewed a patient at the U.S. conference in Philadelphia. This year, she’s moderating a panel on managing the mental health of clinical trial participants; sharing the podium with a leader of the National Health Service (NHS) to discuss how to support clinical research sites; and presenting a session about CSL called “Delivering on Our Promise to Patients and Public Health Through 30,000+ Chief Patient Officers.”
BeVard will discuss advancing patient outcomes from bench to bedside through coordinated patient engagement; partnering across R&D and commercial; and how to learn from the patient’s lived experience and let it drive decisions.
For a number of years, CSL has been active in supporting outreach programs about clinical trials and improving the patient experience. Last year, the company launched a website to make it easier for patients to learn about clinical trials. CSL also 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.