Power to the Patients

Brandon Li

Power to the Patients is a LinkedIn Live and podcast series hosted by Power where clinical research leaders across sponsors, sites, CROs, and patient advocacy groups discuss patient centricity in clinical trials. We explore the bottlenecks in today's systems, challenge the status quo and talk about future opportunities for innovation. Looking for a clinical trial? Visit us at www.withpower.com read less
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Episodes

AliveAndKickn: Raising Awareness about Lynch Syndrome
14-06-2024
AliveAndKickn: Raising Awareness about Lynch Syndrome
Today, we sit down with Robin and Dave Dubin from the AliveAndKickn Foundation, who share their inspiring journey with Lynch Syndrome. Robin explains the genetic intricacies of this hereditary cancer predisposition, emphasizing the crucial role of genetic counseling and the proactive measures taken for their children as previvors.   Dave, a three-time cancer survivor, offers an account of his experiences, shedding light on the motivations behind the foundation's establishment and the significance of patient advocacy. Together, they reveal how personal battles can transform into movements that champion patient-centric approaches in the healthcare landscape.  Topics Discussed:  (00:00:00) Introduction  (00:01:10) Robin’s background  (00:05:07) Screening for Lynch syndrome   (00:07:08) The history of the foundation and what it does   (00:09:10) The biggest challenges in raising awareness for Lynch Syndrome   (00:11:12) What is most effective in educating patients’ families on Lynch Syndrome   (00:12:25) Interacting with larger biopharma and biotech companies pursuing research in this space  (00:15:43) The vaccine for Lynch Syndrome  (00:19:29) Increasing awareness for older patients  (00:22:24) How the foundation tries to educate the clinical community  (00:26:43) The countries the foundation focuses on  (00:28:49) Helping patients communicate with their families  (00:32:46) How people can get involved and support AliveAndKickn  Links:   Robin Beth Dubin   Dave Dubin
Empowering Patients through Digital Platforms in Clinical Trials with Sasha Sinclair
07-05-2024
Empowering Patients through Digital Platforms in Clinical Trials with Sasha Sinclair
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 (00:08:13) How Power's platform plugs into the broader ecosystem (00:10:39) What modern patient recruitment means to Sasha (00:12:19) The core components Sasha looks for in a modern patient recruitment strategy (00:14:56) New strategies and approaches Sasha is excited about in patient recruitment strategies (00:16:54) Piecing together tools for recruitment strategies  (00:20:06) How to think about the incremental investment to be made in recruitment (00:23:06) The proactive versus reactive approach at the beginning of studies (00:24:50) Understanding the patient journey and the decisions that get made as a result (00:26:18) How to think about patient self-advocacy as a sponsor running trials (00:27:15) How a comprehensive effort from all stakeholders could change the game in research  Links:  Sasha Sinclair
Integrating Patient Experience in Clinical Trials with Farah Meghji
25-01-2024
Integrating Patient Experience in Clinical Trials with Farah Meghji
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
Patient-informed clinical trial development with Victoria DiBiaso, VP & Global Head Patient Informed Development & Health Value Translation at Sanofi
11-12-2023
Patient-informed clinical trial development with Victoria DiBiaso, VP & Global Head Patient Informed Development & Health Value Translation at Sanofi
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 (00:08:14) What cross-industry collaboration is like (00:09:41) Cross-industry collaboration milestones (00:12:07) The new voice Victoria wants to bring forward (00:16:56) How the new programs will fit into patients’ lives (00:18:48) How to talk about clinical trials in language patients want to hear (00:19:53) Important factors in implementing patient-centric solutions in clinical trial programs (00:21:24) Victoria’s thinking about what parts of patient disease strategy are shareable and standardizable (00:23:28) What the future of patient-centric clinical trials looks like (00:25:16) What modern patient recruitment means  (00:26:53) How Victoria would change clinical trials overnight if she had a magic wand (00:29:44) How to learn more about what Victoria is doing  Links:   Victoria DiBiaso
Integrating patient centricity culturally and operationally, with Dr. Anthony Yanni, Sr. VP and Head of Patient Centricity at Astellas
21-11-2023
Integrating patient centricity culturally and operationally, with Dr. Anthony Yanni, Sr. VP and Head of Patient Centricity at Astellas
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
Exploring Technology and Patient Engagement in Clinical Trials with Bryan Wylie
17-10-2023
Exploring Technology and Patient Engagement in Clinical Trials with Bryan Wylie
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. The importance of effective pre-planning and team collaboration in improving patient enrollment in clinical trials. The use of modern tools for patient education and recruitment to streamline processes and enhance efficiency. The potential risks and mistakes sponsors might make when implementing new methods. The challenges and solutions for patient recruitment in medical device trials. The impact of streamlining enrollment and creating an easier application process on trial retention and diversity.  Links:  Bryan Wylie
Patient advocacy with Stephanie E. Saville, Foundation Manager for the Pediatric Retinal Research Foundation
11-10-2023
Patient advocacy with Stephanie E. Saville, Foundation Manager for the Pediatric Retinal Research Foundation
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
Oncology trial strategy with Deb Kientop, VP Clinical Operations at Deka Biosciences
03-10-2023
Oncology trial strategy with Deb Kientop, VP Clinical Operations at Deka Biosciences
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 protocols and selecting sites. Necessity of alignment between CRO and sponsors and the approach needed for successful clinical trials. The critical role of collaboration among the sponsor, CRO, and investigator. Importance of removing barriers for patients to access clinical trials and equipping patients and caregivers with the necessary information. Logistical considerations in clinical trials, such as frequency of visits, travel assistance, and insurance coverage. Links:  Deb Kientop