PEP Talks ISPEP

TIffany Patrick on the marathon ‘Mile 19 Magic’ of professionalising patient engagement practices

‘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.

Infusing complexity with care: Brilliant Clinical Trial Expert, Helen McNaught reminds us that support is always the magic ingredient for patients

‘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.

Rare Disease Day and breakfast surprises from ISPEP for Lindsay Randall: The champion of Patient Advocactes

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.

Dancing, diversity and dedication to patient engagement: Superstar Trishna Bharadia gives us a PEP Talk

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.

Dynamic Duman: From award-wining pharmacist to inspiring patient leader, Mark Duman calls for impact in engagement

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.