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 provided funding to sponsor this podcast series. 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.

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.