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A 3-Day Festival of Ideas from Patients, Pharma and FDA on How Patient Engagement and Involvement Gets Done
The 8th annual Patients as Partners was guided by a dedicated group of advisors from pharma and biotech, patient advocacy and FDA whom meet quarterly to develop the conference agenda. This is the only event that truly demonstrates how patient involvement gets done throughout the entire medicines development life cycle to drive greater efficiencies in clinical research.
The program delved deep into patient involvement ideas, strategies and implementation processes that biopharma can utilize in order to help advance patient participation for better clinical outcomes. Each session demonstrated the what, where, when and how to co-create solutions with patients and measure the impact of those initiatives.
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- Real-time examples shared from industry demonstrating HOW to involve patients and the IMPACT it has. A true institutional learning opportunity
- Updates provided on regulatory guidances and new FDA efforts to advancing patient involvement in medicines development
- Input and experience from industry, patient advocacy, patients, regulatory and non-profits to foster knowledge sharing and drive collaboration on patient engagement initiatives within clinical development that can help create better outcomes for patients
- Examples of how collaborating with patients drives greater value for all stakeholders were presented
- Attendees had several choices of break out sessions with live Q&A
- Q&A in plenary talks
- Small roundtable discussions with live video Q&A
- Virtual partnering pre and post conference
- Face to face partnering during the conference is easily available on our platform
- Survey polls throughout the event with real-time response
Throughout our research we learned that the need to involve patients early in the medicines development lifecycle is greater than ever, but often people who have direct contact with patients are not necessarily trained to work with patients to empathize with their condition and lifestyle.
In 2010, we knew through our research that something drastically had to change and a paradigm shift in how the industry views and works with patients was paramount. We also realized that as researchers, we needed to start with ourselves. We needed to make that paradigm shift in who and how we do our research. With that, seven years ago, for the first time we began to research directly with patients. Getting their feedback changed the way we produce our conferences and, more importantly, how we can affect positive change for patients through our conferences.
Patients taught us empathy with their disease, but also with their lifestyle and their struggles in finding and experiencing a clinical trial. In particular, we learned the vital need to:
- Understand and incorporate the patient’s input in designing clinical trials and developing a clinical endpoint
- Vastly improve the patient’s entire experience in a clinical trial
Thanks to patients, we are patients included and we have developed a true partnership in the development of our programs and have the following patient initiatives in place:
- Patient advisory board to research with and gain input on the program agenda
- Patients have speaking opportunities on every session (where applicable)
- Dedicated patient-led sessions, panels and roundtables
- Ask the Patient onsite program where patients share their clinical trial experience with industry to help create better clinical research and trials efficiencies and outcomes for patients
A special thanks to our advisors for their unwavering guidance and expertise in helping us with the research to craft an in-depth agenda that put the “discussion” around patient involvement into action across the entire clinical development continuum. We are committed to providing the same engaging, thought-provoking experience you’ve come to expect from us.
Join the conversation and become part of the Patients as Partners community by following us on LinkedIn and by following the conference hashtag #PatientsasPartners.
If you are interested in participating, please contact service@tcfllc.org.
Sincerely,
Kate Woda |
Valerie Bowling |
Meredith Sands |
Elizabeth Bard |
Adam Kolanko |
Bre Bugbee |
Meg Gould |
Efrosini Zambas |
Danny McCarthy |
Testimonials
“The event was a success and my hat is off to you and your team for organizing and hosting such an important conference—virtually—in the midst of the pandemic. It is so important for us all to come together, especially now, to listen, learn and discuss ways we can be better partners and co-create solutions that will have the most positive impact in the lives of patients. Congratulations on a wonderful event! I am already looking forward to the next one.” – Joanne Waldstreicher, MD, Johnson & Johnson
“Thank you for putting on a wonderful event! I’ve been on virtual conferences throughout the past several months, and this was the best in handling the technology and providing a quality conference experience. Kudos to you and your team!” – Jessie Daw, Patient Advocate
“The flow of the content and speakers was wonderfully laid out.” – Shelley Frappier, The Cute Syndrome Foundation
“The content provided was of the highest quality. I found myself continuously learning as well.” – Alfred Samuels, Patient Advocate
“Remote access is GREAT! Well planned, thoughtful, good variety of content and presenters, engaging.” – Geraldine Blavat, Parkinson’s Foundation
“The content was really spot on- always so patient-focused and driven. So refreshing to have this perspective.” –Jimmy Bechtel, SCRS
“Excellent job of transitioning from in-person to virtual. I want to be more involved, and this conference is inspiring. Thank you.” – Tara S Hiley, Pfizer
“Hearing from patients was a fantastic opportunity; to hear about changes that could be made from patients themselves.” – Nicole Green, GW Pharmaceuticals
“The content and presenters are very relevant and engaging!” – Jenn Curry, Biogen
“Great job! I’ve really enjoyed the topics and speakers. All were very relevant and well chosen.” – Nisha Datta, Duke Clinical Research Institute
“Great job to Kate Woda, Valerie, and the entire team for putting on such a great experience for us, the fantastic selection of speakers and what an engaged audience- audience participation in the chat section was off the charts!” – Archana Sah, Tizona Therapeutics
“It was a great event overall and included some very timely topics.” – Hollie Schmidt, Accelerated Cure Project
“Patients as Partners had a great sense of organization and support.” – Jessica Scott, MD, Takeda