PEP Talks ISPEP

In this hard-hitting Pep talk we hear first hand what it’s like to endure a decade where healthcare systems fail to take your life threatening symptoms seriously.

• John Nelson suffered with mental illness for over a decade, trying numerous medications and treatments without success, until he underwent deep brain stimulation surgery that has put him into complete remission.
• He is passionate about "pulverising the stigma" around mental illness, advocating for greater societal acceptance and earlier treatment-seeking by those suffering.
• He emphasises the critical importance of patient engagement and incorporating the patient voice from the very beginning of medical research and device development, particularly in the mental health space.
• He calls on healthcare professionals and companies to approach mental health with the same empathy and commitment as other medical conditions, in order to drive innovation and improve outcomes for those suffering.

Emma hosts a PEP Talks session with Dr. Roz, a renowned figure in patient engagement, discussing her journey and insights in the field. Dr. Roz, a pulmonologist with a rich background in clinical practice and academia, shares her experiences from her tenure at Pfizer and BioMarin, highlighting the importance of patient engagement in the biopharmaceutical industry.

She emphasises the need for listening to patients and involving them in the product lifecycle to prioritise patient-relevant outcomes. Dr. Roz reflects on the challenges and successes in establishing patient engagement teams, advocating for a culture of respect and trust towards patients as lived experience experts.

She discusses the complexities of engaging patients early in the development process and the perceived legal barriers, stressing the importance of transparent communication. Now consulting, Dr. Roz continues to contribute to the field, drawing inspiration from her family and the patient engagement community.

Lisa Petermann, Chief Patient Experience Officer at Roche Canada, shares her journey and insights in a PEP Talks podcast. Her role, co-created with Roche's patient co-creation council, marks a bold step in patient engagement, emphasising collaboration and precision engagement. Lisa's diverse background, including a PhD in medical history, informs her approach to amplifying patient voices. She discusses the evolution of patient-centered care, highlighting milestones like the IOM report and the rise of patient advocacy. Lisa advocates for professionalisation and precision in patient engagement, aiming to integrate patient voices in healthcare decision-making. Her story underscores the importance of collaboration and innovation in transforming patient experiences.

In this episode of PEP Talks, Emma interviews Marlena Vincent, a patient engagement professional at Intercept Pharmaceuticals. Marlena shares her journey in patient advocacy, inspired by her father's healthcare work in Mexico and her own experiences in immigration advocacy.

She discusses the challenges and rewards of working in patient engagement across different pharmaceutical companies, including Moderna and Bluebird Bio, and her current focus on liver diseases. Marlena emphasises the importance of diversity, inclusion, and collaboration with patient communities, highlighting the role of technology and AI in advancing patient advocacy.

She also reflects on the emotional challenges of the job and the importance of self-care. The conversation underscores Marlena's dedication to patient-centricity and her ability to navigate complex healthcare environments, making her a standout figure in the field.

Danielle Alstat, a patient advocate diagnosed with primary biliary cholangitis (PBC), shares her journey from diagnosis to becoming a prominent voice in patient advocacy.

After facing the shock of her diagnosis and the challenges of working as a respiratory therapist during the COVID-19 pandemic, Danielle found solace and support through online communities, notably the PBC Foundation. Her advocacy efforts led her to establish a support group with over 2,000 members, providing a platform for patients worldwide to connect and share experiences.

Danielle emphasises the importance of patient voices in clinical trials, highlighting ethical concerns with long-term placebo use in PBC trials. Her role as a patient representative at an FDA hearing underscored the need for regulatory systems to evolve and better accommodate patient needs.

Through collaboration with various stakeholders, including pharma companies, Danielle advocates for change in clinical trial protocols to ensure patient safety and efficacy. Her story is a testament to the power of community, education, and the relentless pursuit of advocacy to drive meaningful change in healthcare.

This episode features Dr Anthony Yanni, global head of patient centricity at Astellas Pharma. Sponsored by Intercept Pharmaceuticals, the episode delves into the importance of patient engagement and centricity in the pharmaceutical industry.

Dr Yanni discusses his methodology of "dull nagging pressure" to advocate for patient centric approaches, emphasising persistence and the need for industry-wide adoption. He shares insights from his clinical experience and the challenges of integrating patient perspectives into medicine development and delivery.

The conversation highlights the role of patient centricity in rebuilding trust with patients and the necessity of sharing successful practices across the sector. Dr Yanni's work at Astellas, including the Patient Centricity University, aims to inspire and educate professionals on creating impactful patient engagement strategies.

The episode concludes with a call to action for patient engagement professionals to embrace their roles as privileged and essential in transforming healthcare.

Emma hosts a Pep Talks episode, sponsored by Intercept Pharmaceuticals, featuring Alexandra Charge, CEO of ISPEP. The podcast explores patient engagement leaders' journeys, focusing on Alex's extensive pharmaceutical experience. With over 20 years in clinical trials and operations, Alex shares her passion for humanising healthcare and prioritising patients.

She discusses her career path, challenges in large organisations, and her commitment to transforming clinical trials to prioritise patient experience. Alex emphasises the importance of trust, perseverance, and innovation in driving industry change. Despite personal setbacks, including health challenges, she remains dedicated to improving patient engagement and fostering trust in clinical trials.

The conversation highlights the need for industry-wide commitment to raising awareness about clinical trials and integrating them into patients' healthcare journeys. Alex's leadership style, characterised by empathy and adaptability, is praised as essential for building trust and driving transformation in the pharmaceutical sector

In this episode of Pep Talks, Emma interviews Michaela Dinboeck, the Head of Patient Engagement at Novartis. Michaela discusses her role in integrating patient perspectives into the development and R&D lifecycle at Novartis, emphasizing the importance of patient-focused drug development.

She shares insights on the challenges and successes of building a robust patient engagement function within a large organisation, highlighting the significance of measuring impact and capability building. Michaela also reflects on her personal journey and the inspiration she draws from historical movements like the suffragettes.

The conversation underscores the ongoing efforts and future challenges in professionalising patient engagement and ensuring it becomes a mainstream practice in the pharmaceutical industry.

In this episode of Pep Talks, Emma interviews Rina Newton, a renowned expert in compliance, particularly within the pharmaceutical industry. Rina shares her journey into the field of compliance, emphasising the importance of understanding and navigating the complexities of self-regulation.

The discussion delves into the challenges faced by pharma companies in patient engagement and the fear of breaching compliance codes, which often leads to inertia. Rina advocates for a more proactive approach, encouraging companies to innovate and pilot new methods of patient interaction while maintaining compliance.

The conversation also highlights the potential for patient advocacy groups to drive change and the need for pharma companies to embrace a more collaborative and patient-centric approach. Rina's insights underscore the necessity of balancing compliance with innovation to improve patient outcomes and industry practices.

In this episode of PEP Talks, Emma interviews Dr. David Gillen, the Chief Medical Officer of Norgine, discussing the evolution and importance of patient engagement in the pharmaceutical industry. Reflecting on their first meeting 16 years ago, they explore how patient demands and advocacy have shaped industry practices.

Dr. Gillen emphasises the critical role of patient engagement professionals in drug development, highlighting the shift from a physician-centric approach to a more patient-focused strategy. He acknowledges the challenges and benefits of integrating patient voices into clinical trials, regulatory frameworks, and medical affairs. The conversation also touches on the impact of social media and online communities in amplifying patient voices, the professionalisation of patient engagement, and the complexities of developing medicines for paediatric populations.

Dr. Gillen shares insights on balancing safety, efficacy, and patient needs, and underscores the importance of teamwork and resilience in overcoming obstacles in medicine development.