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 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 organizations. 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 organizations.

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.