Power to the Patients

In today's episode, Sasha Sinclair discusses the current challenges and emerging solutions shaping the future of patient recruitment and engagement in clinical trials. Sasha has a comprehensive background in clinical operations that allows her to share an informed perspective about how digital strategies and improved education can transform the landscape of clinical research, making it more accessible and inclusive for patients everywhere. She talks about the problem of patients not having access to trials and how to approach it, the new patient recruitment strategies she's excited about, and how the patient's journey affects the decisions made along the way.   Topics Discussed: (00:00:00) Introduction (00:00:56) Sasha’s background and her current role (00:02:38) Why patient recruitment is such a struggle currently (00:03:59) The ceiling on the percentage of providers that could feasibly do research and why it's limited (00:04:50) How to crack the problem of patients not having access (00:06:27) What an informal exchange of knowledge is and how it works for the patient

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 diseasesThe volunteer-driven nature of the foundationWhere Stephanie sees progress coming from and next steps in the journeyThe 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 complexityThe intricacies of rare disease research, and the potential roles of pharma, biotech companies, and other organizations in supporting these initiativesThe concept of "power to the patients" in the rare disease space, and the need for patients to be their own advocates and share their storiesThe 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

In today’s healthcare landscape, the term ‘patient-centric’ has been showing up more and more. It emphasizes the importance of considering the patient’s needs, experiences, and preferences. In the realm of oncology clinical trials, patient-centricity plays a pivotal role. But achieving it isn't easy.  In this episode, our guest Deb Kientop, a pharmaceutical professional with 27+ years of experience, including research, clinical, medical affairs, strategy and management, explores the complex world of patient-centric oncology clinical trials. Deb shares her personal experiences, and provides a unique perspective on the intricacies involved in achieving patient-centricity in these trials. Tune in to explore the hurdles that exist in crafting patient-centric clinical trials, the role that collaboration plays in clinical trials, and how to dismantle barriers that deter patients from accessing clinical trials.  Topics Discussed:  Deb's personal experiences with clinical trials and how it highlights the importance of patient-centricity in oncology clinical trials.Challenges in designing patient-centric clinical trials for oncology patients due to varying patient pathways and needs.The role of patient advocacy groups and advisory boards in incorporating the patient voice into clinical trial protocol design.Practical considerations like time, effort, and potential travel that affect protocol inclusivity. Importance of understanding data in context, technology use, and timelines when designing protoco

In this episode, Scott Schliebner, a life sciences and digital health executive with experience across the biopharma, CRO, medtech, and non-profit sectors, discusses the evolution of patient-centricity. With over 30 years of experience, Scott provides insights into patient-centered design in clinical research.  The discussion also covers the necessity of using more humanizing terms for patients, the crucial balance in patient recruitment, the role of patient advocacy, and the future of the industry. Topics Discussed: Introduction to Scott Schliebner, a life sciences and digital health executiveEvolution of patient involvement in clinical researchDiscussion on the current state of the industry and areas for improvementIntroduction to Power's platform, designed to streamline interactions between patients and researchersFuture developments in healthcare and the role of patient-centricityConsideration of the administrative burden of clinical trials and potential ways to accelerate the processImportance of building relationships with advocacy groups and providing a range of clinical trial opportunities for patientsClosing remarks on the future of patient-centricity in clinical research, and an invitation to listeners to join the ongoing conversation Links: Scott Schliebner