PEP Talks ISPEP

In this episode of Pep Talks, Naomi Leachfield shares her journey from a paediatric nurse at Great Ormond Street Hospital to Director of Patient Advocacy at Bionical Emas. Inspired by her sister’s battle with leukaemia, Naomi’s career is driven by a desire to help families who have exhausted approved treatments.She emphasises the need for patient-centred protocol design to avoid impractical clinical requirements on young children. At Bionical Emas, she has established a co-creation board to involve patients and families directly in developing resources. Naomi also clarifies the differences between post-trial access (PTA) and expanded access programmes (EAP) for investigational medicines. Finally, as an ISPEP ambassador, she champions global collaboration in patient engagement, highlighting Alfred Samuels, Sandra Botterworth, and Guna from Daiichi as key industry leaders to learn from.

In this episode, Seth D. Ginsburg, co-founder of Creaky Joints and the Global Healthy Living Foundation (GHLF), shares his journey from patient advocate to industry leader. Driven by personal and family experiences with arthritis, Seth built a community that now reaches millions, championing a human-centred approach rooted in empathy and trust.Seth explains why effective patient engagement demands long-term relationships rather than short-lived campaigns. He calls on professionals to build genuine bridges between patients and the healthcare industry, arguing that authentic engagement is "good ethics, good science, and great business." Finally, he tackles the industry's biggest challenges: avoiding performative advocacy, proving business value to leadership, and ensuring patient insights translate into real-world changes in protocols and access pathways.

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.

‘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.

‘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.

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.

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.

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.

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.

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.