Explore every episode of the podcast PEP Talks ISPEP

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.

This Pep Talks episode features Begonya Nafria Escalera, head of patient engagement in research at St. John De De Children's Hospital, who champions the inclusion of children and young people in clinical research, a practice not yet widespread in Spain.

Begonya discusses the challenges of communicating complex trial protocols to young patients and their families, highlighting the innovative methods her department employs, such as high-realistic simulation, to ensure trials are both patient-friendly and effective. Sharing her personal journey, Begonya emphasises the importance of publishing successful patient involvement projects to inspire others.

The conversation underscores the need for persistence, passion, and collaboration in patient engagement and celebrates the positive trend of pharmaceutical companies increasingly valuing patient input in clinical trial design.

On PEP Talks, Emma interviews communications coach and advocate Monica Kleijn Evason. They recall meeting at a cancer conference where survivors' "FUCK cancer" shirts sparked a discussion on disruptive language in advocacy. Monica shares her advocacy journey, prompted by her son's brain tumor diagnosis and their struggles with the medical system. She stresses communication and empathy in healthcare, especially for young survivors post-treatment.

They also discuss emotional regulation for advocates and improved communication between patients, doctors, and pharma. Monica concludes with inspiration from young survivors who find humor in hardship.  

Pep Talks, hosted by Emma Sutcliffe, is a podcast series sponsored by the International Society for Patient Engagement Professionals (ISPEP). In a twist, Emma is interviewed by Alexandra Charge, CEO of ISPE, about her new role as Chief Patient Officer.

Emma shares her journey from a medical biochemist to a patient engagement professional, emphasizing the importance of empathy and strategic business practices in the pharmaceutical industry.

The discussion highlights the challenges and responsibilities of patient engagement professionals, the need for professionalization, and the evolving role of patient advocacy. Emma envisions a future where new leaders emerge within the ISPE community, fostering growth and development in patient engagement.

In this episode, Emma interviews Rasmus, the head of communication at James Lind Care, a clinical trial research organization. Rasmus discusses the challenges of patient recruitment for clinical trials, emphasizing the need for increased awareness, education, and simplified communication.

He shares insights on his role in bridging the gap between patients and the pharmaceutical industry, highlighting the importance of understanding patient needs and motivations. Rasmus also talks about the significance of change management in the pharma industry and the necessity of presenting a business rationale for patient engagement.

The conversation underscores the value of diverse perspectives and the impact of effective communication in fostering patient participation in clinical research.

In this episode of Pep Talks, Emma interviews Steve Clark, a cancer survivor and patient advocate. Steve shares his journey from diagnosis to founding Strive for Five, a non-profit focused on providing hope to others with cancer.

He discusses the importance of effective communication between patients and doctors, the nocebo effect, and the bio-psychosocial model of care. Steve emphasizes the power of positivity and the importance of support systems, including therapy and pets.

Stacey Hurt, Chief Patient Officer at Parexel, shares her journey and role in a PEP Talk podcast sponsored by Medscape. As a stage four colorectal cancer survivor and caregiver to her son with profound disabilities, Stacey brings authenticity and a unique perspective to her position. She emphasizes the importance of patient engagement in clinical trials, advocating for the inclusion of patient voices to improve trial design and outcomes.

Stacey discusses the challenges and strategies in defending the business value of patient engagement, highlighting the significant cost savings and efficiency gains. She also reflects on her personal experiences and the impact of her work on the industry, aiming to inspire and guide others in patient advocacy. Stacey's story underscores the transformative potential of patient-driven solutions in clinical research.

In this PEP Talk we hear from multi academic award winning cancer researcher, Victoria Harvey-Jones, about the three 'Rs' that we must address to improve communications between doctors and patients; and why the white paper she co-authored with other leaders is a game changer to humanise healthcare communications. 

• Patient centricity to Integration: enhancing Cancer outcomes - To drive improvements in patient outcomes, it's vital that we integrate the lived experiences of people living with diseases like cancer into medical education. Read more in Medscape’s white paper, "Patient Centricity to Integration: Enhancing Cancer Outcomes," which won an Award of Excellence at APEX, Awards for Publication Excellence 2024!

Hear how Lara Bloom became the first Associate Professor of Patient Engagement Practice and built the Ehlers Danlos Society courtesy of a chance meeting in an art gallery.

In this episode of "Pep Talk," Lara shares her journey from a career in photography to becoming a leading advocate for Ehlers-Danlos syndrome (EDS) and patient engagement. She discusses the challenges of living with EDS, the importance of patient advocacy, and her work in building the Ehlers-Danlos Society into a global organization. Lara emphasizes the need for healthcare professionals to listen to patients and incorporate lived experiences into care.

She also highlights the significance of collaboration and the role of patient engagement in improving healthcare outcomes. The conversation concludes with Lara's thoughts on maintaining a positive outlook and the importance of trusting the process.

In this episode of the Pep Talks podcast, Emma interviews Rachel Giles, an associate professor of internal medicine and president of VHL Europa. Giles shares her journey from a career in internal medicine, nephrology, and oncology to patient advocacy, driven by her personal experiences with a family affected by a tumour suppressor syndrome. 

She discusses her work as a medical journalist and medical science officer, and her long-term involvement in patient advocacy since 2003. Giles also talks about her research on the VHL tumour suppressor gene, a single gene mutation causing significant distress and being the main driver of kidney cancer. She highlights the importance of having members of patient organisations with a scientific background to help interpret medical literature. Giles also discusses the challenges and rewards of collaborating with pharmaceutical companies and the need for a common language between patients and professionals. 

She shares her experiences at ESMO, a European Society for Medical Oncology, and the importance of patient engagement in improving patient outcomes. Finally, Giles shares her strategies for overcoming obstacles in patient engagement, including educating medical professionals about the benefits of patient engagement.

In this episode of the Pep Talks podcast, hosted by the International Society for Patient Engagement Professionals (PEP), Robert Mitchell Thain, CEO of the PBC Foundation, shares his insights on patient advocacy.

Thain discusses the challenges and rewards of leading a patient organisation, emphasising the importance of patient experiences in shaping advocacy efforts. He also highlights the need for patient organisations to collaborate with pharma companies, research companies, and other stakeholders to improve patient care.

Thain shares his personal journey into patient advocacy, inspired by his mother's battle with primary biliary cholangitis (PBC). He also discusses the successful campaign to change the name of the disease from primary biliary cirrhosis to primary biliary cholangitis, which had significant practical and psychological benefits for patients.

Thain concludes by encouraging patient engagement professionals to always strive to do the right thing and to utilise the knowledge and experiences of patients to improve their arguments and advocacy efforts.

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.

Emma hosts the third series of Pep Talks, sponsored by Norgine Pharmaceuticals, featuring Mark Bradley, a pioneer in patient engagement. Mark shares his journey from a student nurse in Northern Ireland to founding the People With platform.

He discusses the importance of personalized medicine and the need for better understanding patient profiles to improve treatment outcomes. Mark's vision is to use real-world data to inform clinical trials and patient care, emphasising the value of patient input in medical research. He highlights the challenges and successes of integrating patient data into healthcare, aiming to enhance the efficiency and effectiveness of treatments.

Emma and Mark explore the potential of platforms like People With to revolutionise patient care and clinical research, making a significant impact on the future of medicine.

This PEP Talks episode features an engaging conversation between Emma and Paul Simms, founder and chief executive of Impatient. Sponsored by Norgine, the discussion delves into the challenges and frustrations of patient engagement in the pharmaceutical industry.

Paul shares his journey and the motivation behind founding Impatient, emphasising the need for a culture of continuous experimentation and adaptation in pharma. The conversation highlights the importance of integrating patient engagement as a standard practice, removing emotional and professional barriers, and fostering a more innovative and responsive industry. Emma and Paul advocate for proactive, creative approaches to patient engagement, urging professionals to act on their ideas swiftly and decisively.

Emma hosts another edition of PEP Talks, featuring Dr. Gudula Peterson, the global patient engagement lead at Grunenthal.

Gudula shares her extensive experience in the pharmaceutical industry, highlighting her journey from compliance to patient engagement. She discusses the evolution of patient involvement in clinical trials, emphasizing the importance of integrating patient perspectives early in the process.

Gudula also reflects on her roles at Grunenthal, including her work in governmental affairs and patient centricity, and the impact of collaborative projects like the Societal Impact of Pain platform.

She underscores the need for structured patient engagement practices and the benefits of professional societies like ISPEP. Gudula concludes by sharing her motivation and the importance of teamwork in advancing patient engagement.

In this episode of the Pep Talks podcast, Emma talks to Liselotte Hyveled, the Chief Patient Officer at Novo Nordisk. Liselotte shares her unconventional journey from a pharmacist to her current role, emphasizing her focus on patient-centricity throughout her career. 

She discusses the importance of understanding patient experiences and integrating those insights into the development of treatment options. Liselotte outlines the structured approach of her team, which includes patient voice strategy managers, engagement managers, and insights and intelligence managers, to ensure a systematic and impactful patient engagement strategy. 

She highlights the challenges of appreciation, bias, and compliance in patient engagement and underscores the significance of long-term relationships with patient organisations. Liselotte also shares her personal motivation and the support she received from industry peers, encouraging others to seek guidance and maintain the patient’s voice within their organisations.