It’s no longer unusual to hear about patient engagement in the biotech and pharmaceutical industry, but truly involving patients in the business of developing medicines takes concrete action. The upcoming Patients as Partners conference in Philadelphia March 20-22 is all about real, in-person engagement with patients who are the experts in what it’s like to live with their illness or condition.
To ensure that patients have a voice at the event, Patients as Partners is offering 20 free registration scholarships to attend the two-day meeting. They’re looking for patients and their caregivers who have experience participating in clinical trials and advocacy work. Preference is given to patients who have not attended before. Apply by February 23 to be considered.
Organizers hope patient attendees will give the industry feedback about how to design clinical research 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.
Attendees will have access to conference sessions, which include a keynote presentation from Irisaida Mendez, a stage IV lung cancer survivor. She’ll talk about her clinical trial experience and the financial challenges involved in seeking the care she needed. Also on the agenda: an “ask the patient” panel and sessions on digital health literacy, mobile technology, caregivers, diversity and how to reduce the burden clinical trials place on participants.
CSL’s Rodney Winley plans to attend with other company leaders and says Patients as Partners presents an opportunity for industry, regulatory bodies and patient representatives to collectively discuss the successes and challenges of increased patient involvement.
“While patient involvement in medicine development is always one of the key topics of discussion at larger industry conferences, Patients as Partners is uniquely positioned as a conference solely focused on the amplifying the patient voice,” said Winley, CSL Senior Director of R&D Patient Partnerships.
For several years, CSL has been active in patient outreach to improve clinical trials and the patient experience. The global biotech company, which includes CSL Behring, CSL Seqirus and CSL Vifor, launched a user-friendly clinical trials website; is a member of the Patient Advocacy Leaders and Drug Development Industry Network (PALADIN); and partnered with the AWARE for All program from the Center for Information and Study on Clinical Research Participation (CISCRP).