Avsnitt
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This episode features a conversation between host Emma and Rebecca Vermeulen, a VP at Roche Genentech, who clarify that the PEPs community and ISPEP are complementary, non-competing organisations working to raise industry standards.
Moving from pharmacy into medical affairs, Rebecca built key capabilities at Roche—including MSL teams, publications, call centres, and a global patient partnership team. Both she and Emma emphasise choosing purpose-driven roles over linear CV-building.
Navigating large organisations requires resilience and adaptability. Supported by the Healthcare Businesswomen’s Association (HBA), Rebecca rejects traditional masculine styles in favour of authentic, emotional leadership.
Finally, they highlight vulnerability and openness regarding neurodiversity as essential tools to build psychological safety, noting that leaders should give teams the space to fail, grow, and lean on industry peers during setbacks.
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‘Novo Nordisk has not had any input into the development of the podcasts or the selection of speakers. Novo Nordisk is the sole sponsor of the activity’.
In this Pep Talks episode, Emma and Tiffany Patrick (Amicus Therapeutics) discuss the maturation of patient engagement. Tiffany highlights how Amicus embeds patient perspectives into executive decisions, reflecting a wider industry shift where patients are now treated as co-creation partners and expert evidence generators.
Key takeaways include:
Strategic Value: The field is professionalising, with a focus on measuring impact and aligning with new FDA guidance on patient preferences.Career Advice: Tiffany encourages practitioners to seek non-profit experience and remain intentional about their therapeutic settings.Future Outlook: While AI presents new opportunities, it must be managed with empathy. The speakers conclude that patient engagement is nearing a "marathon finish," supported by new academic and certification standards.
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Saknas det avsnitt?
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‘Novo Nordisk has not had any input into the development of the podcasts or the selection of speakers. Novo Nordisk is the sole sponsor of the activity’.
Helen McNaught, a specialist trial nurse with a rich background in clinical research, shares her journey and insights in the latest edition of PEP Talks, a podcast by the International Society for Patient Engagement Professionals. Sponsored by Novo Nordisk, the episode delves into Helen's career, which began with a personal connection to clinical trials when her brother participated in a lifesaving trial for acute lymphoblastic leukaemia. Her professional path led her to specialise in haematology oncology at Cambridge University Hospital, where she worked on phase one to phase four clinical studies. Helen also contributed to Blood Cancer UK by starting a clinical trials navigation service, highlighting the need for better patient information and support.
The podcast discusses the challenges and triumphs of patient engagement in clinical trials, emphasising the importance of practical considerations in trial design and the evolving role of patient advisory councils. Helen recounts a poignant story of a patient named Sue, who faced logistical challenges during a clinical trial, underscoring the need for more patient-centric approaches. Helen expresses optimism about the industry's shift towards meaningful patient engagement, noting the increasing receptiveness of pharma companies to patient input and the strategic integration of patient voices in trial design. The episode concludes with a call to action for more diverse perspectives in patient engagement, including insights from regulators and trial managers.
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Novo Nordisk has not had any input into the development of the podcasts or the selection of speakers. Novo Nordisk is the sole sponsor of the activity.
Lindsay Randall, a children’s nurse and patient advocate, shares her journey of founding a patient advocacy group after her two children were diagnosed with the rare condition SLC6A1. This condition, affecting fewer than 40 families globally at the time of her son's diagnosis, presents significant challenges, including learning disabilities and challenging behaviours. Lindsay's advocacy work began with fundraising efforts and evolved into founding a patient organisation called Offers Quest in 2019, despite the challenges of raising two children with a rare disease during the COVID-19 pandemic.
Lindsay emphasises the importance of meaningful patient engagement, cautioning against tokenism and highlighting the need for genuine listening and understanding in research projects. She also discusses the complexities of navigating scientific jargon and the importance of translating this information for the patient community. The podcast episode, published for Rare Disease Day, underscores the ongoing efforts to improve diagnostic and care pathways for rare disease patients.
In recognition of her efforts, the ISPE community announced a donation of 5% of all memberships from Rare Disease Day this year to the next, to support Lindsay's patient organisation. This gesture acknowledges the significant impact of her work and the importance of supporting rare disease communities.
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Novo Nordisk has not had any input into the development of the podcasts or the selection of speakers. Novo Nordisk is the sole sponsor of the activity.
Trina Baria, a renowned patient advocate, pivoted from studying languages at the University of Manchester to healthcare advocacy following a multiple sclerosis diagnosis. This experience highlighted a lack of support, particularly within the South Asian community, leading her to establish a consultancy focused on patient engagement, diversity, equity, and inclusion.
Trina emphasises the importance of embedding patient engagement in medicine for better outcomes and advocates for equitable compensation for patient authors. Collaborating with pharma, academia, and medical communications, she works to foster inclusive strategies. Her personal experiences, including raising MS awareness on a special edition of "Strictly Come Dancing," have cemented her status as a recognised leader driving change in the community.
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The latest episode of Pep Talks, a podcast series by the International Society for Patient Engagement Professionals (ISPE), features a conversation with Mark Duma, a veteran in patient engagement with over 30 years of experience.
Mark shares his journey from a pharmacist to a leader in patient engagement, highlighting his role in founding the Patient Information Forum (PIF) to improve patient information quality. He emphasises the importance of personalised information as a form of therapy and the need for better patient engagement practices.
Mark discusses the challenges of integrating patient perspectives into healthcare, advocating for a balance between medical and therapeutic models. He also highlights the societal impact of patient engagement and the need for a common definition and metrics to measure its effectiveness.
The episode concludes with a call to focus on the impact of patient engagement initiatives, emphasising the importance of societal benefits over mere compliance.
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Amy Cohen made history as the first person with sickle cell disease to complete a marathon. Diagnosed at birth due to mandatory newborn screenings in New York, she led a relatively normal childhood. Her motivation to run a marathon was inspired by watching Oprah Winfrey and was later reignited by New York's running culture.
Amy's advocacy for the sickle cell community is driven by her personal experiences and the challenges faced by others with the disease. She highlights the importance of sharing information, as many patients are unaware of treatment advancements. Amy also started her own consultancy, The Patient Room, to focus on patient and community engagement, aiming to bridge the gap between patients and the pharmaceutical industry.
Her work emphasises the need for collaboration and trust building, advocating for better access to information and resources. Amy's dedication to her community and her efforts to improve sickle cell care through legislative advocacy in Massachusetts demonstrate her commitment to making a difference. She remains motivated by influential figures and the support of her community.
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Novo Nordisk has not had any input into the development of the podcasts or the selection of speakers. Novo Nordisk is the sole sponsor of the activity.
In this episode of PEP Talks, sponsored by Novo Nordisk, host Emma interviews Ify, the Chief Patient Officer for the rare disease franchise at Novo Nordisk. Ify shares her journey from being a haematologist oncologist to becoming a Chief Patient Officer, highlighting the unique path that led her from academia to the pharmaceutical industry.
She discusses the misconceptions about the industry and emphasises the alignment of her values with Novo Nordisk's mission to prioritise patient care and community investment. Ify also talks about the importance of understanding the patient community, the need for collaboration across different sectors, and the evolving nature of patient engagement practices.
She highlights the importance of empathy, understanding, and collaboration in her role, and expresses her commitment to driving change for people living with rare diseases. Emma concludes the episode by praising Ify's leadership and her dedication to patient advocacy and engagement.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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.
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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.
- Visa fler
