Power to the Patients Brandon Li

How much do you know about the behind-the-scenes process of clinical trials? Our guest today, Farah Meghji, has a unique perspective on the matter through her role at Roche Canada, where patient experience sits at the heart of every stage of solution development. We're thrilled to share her insights on balancing the urgency in clinical trial development with the necessity of embedding patient experiences from the start, transforming the way we think about patient-inclusive culture. Farah also elaborates on how Roche Canada is revolutionizing patient education materials to be more accessible and user-friendly.
Topics Discussed:

(00:00:00) Introduction
(00:00:46) What Farah’s current role entails
(00:01:18) The initiatives that Farah’s team takes on 
(00:02:13) The patient journey that spans R&Ds through post-marketing
(00:03:36) What being the chair of the above-brand patient council entails 
(00:05:19) Examples of things implemented to further the patient experience
(00:06:41) The differences in patient education communication in Canada
(00:07:58) How Farah thinks about the patient experience from the R&D side of things
(00:13:18) Analysis of the top barriers for patients as they think about trials
(00:16:06) Specific initiatives to address barriers to patients
(00:19:04) Trends in where patients are going for information and how they’re using the internet to take control of their situation
(00:22:40) The approaches to finding empowered patients today
(00:24:20) What Power could do to have the most impact
(00:31:08) How Farah hopes to see the industry evolve
(00:35:32) Farah’s final thoughts for the audience

Links:
Farah Meghji

Explore the world of clinical trials with our guest, Megan Liles. Drawing from her 25+ years of experience, Megan offers a practical perspective on the importance of prioritizing patients in clinical trials. She discusses the role of patient advisory boards, improving access to clinical trials, and understanding the real-life impact on patients. Megan emphasizes the significance of incorporating patient-centric approaches into clinical trial design.
Topics Discussed:

(00:00:00) Introduction
(00:01:06) Megan's background and current role
(00:05:01) What goes into making patients stakeholders
(00:09:03) Why clinical trials aren't already easier for patients to navigate
(00:16:24) How sites and site design are part of making patients stakeholders
(00:19:59) The success of and concerns about physician referrals
(00:25:07) The unpredictability of clinical trials
(00:27:54) What Megan thinks everyone is getting wrong today
(00:29:49) Flexibility in GCPs
(00:32:45) What's productive in the space of improving awareness and access to patients that should be considering clinical trials
(00:38:00) Facebook as a tool
(00:39:47) How a protocol has to be designed for it to be feasible for the patient's real life
(00:41:12) Ideas that looked promising during the pandemic that haven't worked out

Links:Megan Liles

Today’s episode features Victoria DiBiaso from Sanofi. Victoria provides a detailed analysis of patient-informed development and the critical importance of diversity and inclusion in clinical trials. With her unique perspective stemming from her nursing background, she explains the significance of patient-centric trials and the future of healthcare. 
Throughout the episode, Victoria elaborates on effective communication with patient communities, the significance of trust-building, and how understanding social determinants of health can aid in forging strong relationships with patient advisors. The episode further explores the world of drug development, from considering patient-relevant endpoints to health scales and label opportunities.  
 Topics Discussed: 

(00:00:00) Introduction
(00:00:51) Victoria’s background and how she ended up in her current role 
(00:02:32) An explanation of patient-informed development 
(00:03:48) The meaning of patient centricity 
(00:06:13) Stumbling blocks to patient centricity 

In this episode we delve into the topic of patient centricity in clinical trials with Dr. Anthony Yanni, Senior Vice President and Global Head of Patient-Centricity at Astellas Pharma Inc. Dr. Yanni shares what patient-centricity means for him and how it is integrated both operationally and culturally at Astellas.
We explore how specialized teams work collaboratively to transform patient information into practical solutions, and the conscious patient-awareness that is a fundamental part of every role at Astellas. You'll also discover some innovative programs that bring patient-centricity to life.
Topics Discussed:

(00:00:00) Introduction
(00:00:52) Dr. Yanni’s career and how he ended up in his current role
(00:02:14) What patient-centricity means to Dr. Yanni 
(00:04:12) Bringing in patient-centricity as a culture 
(00:06:13) Bringing interested patients into the R&D side of operations 
(00:08:15) Decisions that go a different direction due to more patient-centricity 
(00:10:38) How to gather impactful insights
(00:12:02) Presenting to the research team
(00:14:32) How clinical operations insights translate to the recruitment space
(00:16:16) How behavioral science factors in
(00:18:35) What the pharma industry side gets wrong about patient-centricity today
(00:21:08) Quantifying the impact of a patient’s interest
(00:25:15) The first things to do when taking a new company on the journey Astellas has been on
(00:26:49) How to reach out to Dr. Yanni

Links:
Dr. Anthony Yanni

Today’s guest is Bryan Wylie, Global and Scientific Director of Clinical Affairs, Operations, and Field. He joins today’s episode to share his thoughts about the significance of patients in the process of clinical trials and how harnessing technology can enhance the overall success of clinical trials. 
This episode explores the intersection of patient-centricity, technology, and efficiency. Bryan provides valuable insights on the importance of putting patients at the heart of clinical studies and how technology is transforming the way these trials are conducted. Bryan also discusses the role of sponsors, effective pre-planning, and team collaboration in improving patient enrollment and enhancing overall trial efficiency. 
Topics Discussed: 

The importance of patient-centricity in clinical trials and how it contributes to the overall success of these studies. 
The role of sponsors in simplifying complex scientific data for patients, thus enhancing patient interaction and participation. 
The application of AI technology in clinical studies, including the concept of a safety score decipherable by patients. 
The potential of technology in helping sites manage resources efficiently and tailor patient follow-ups. 

As the dedicated Foundation Manager for the Pediatric Retinal Research Foundation (PRRF), Stephanie Saville offers a unique and enlightening perspective into the specialized area of pediatric retinal research. The PRRF is a volunteer-driven organization that focuses on rare pediatric retinal diseases, offering support for children and adults who experience vision loss.Throughout our conversation, Stephanie emphasized the challenges rare diseases face and explored the complexities of rare disease research.
Stephanie believes in the importance of understanding the 'why' behind the diagnosis, and the power of patient stories in driving change. Stephanie offers insights on how organizations can work with advocacy groups like the PRRF to drive change together.
This is a must-listen episode for anyone interested in rare disease advocacy, and the power of patient stories.
 
Topics Discussed:

An introduction to Stephanie Seville, the Foundation Manager for the Pediatric Retinal ResearchFoundation (PRRF), and an overview of the organization's focus on rare pediatric retinal diseases
The volunteer-driven nature of the foundation
Where Stephanie sees progress coming from and next steps in the journey
The importance of the foundation’s biobank in understanding and finding the cause of rare pediatric diseases, and the challenges faced in this field such as funding and research complexity
The intricacies of rare disease research, and the potential roles of pharma, biotech companies, and other organizations in supporting these initiatives
The concept of "power to the patients" in the rare disease space, and the need for patients to be their own advocates and share their stories
The importance of inclusivity and access in clinical trials, and how these can be ensured for patients with rare diseases

 
Links: 
Stephanie E. Saville 
Pediatric Retinal Research Foundation