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.

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.

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.

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'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.

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.

• 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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

Gudula shares her extensive experience in the pharmaceutical industry, highlighting her journey from compliance to patient engagement. She discusses the evolution of patient involvement in clinical trials, emphasizing the importance of integrating patient perspectives early in the process.

Gudula also reflects on her roles at Grunenthal, including her work in governmental affairs and patient centricity, and the impact of collaborative projects like the Societal Impact of Pain platform.

She underscores the need for structured patient engagement practices and the benefits of professional societies like ISPEP. Gudula concludes by sharing her motivation and the importance of teamwork in advancing patient engagement.

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 organisations. 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 organisations.

Begonya discusses the challenges of communicating complex trial protocols to young patients and their families, highlighting the innovative methods her department employs, such as high-realistic simulation, to ensure trials are both patient-friendly and effective. Sharing her personal journey, Begonya emphasises the importance of publishing successful patient involvement projects to inspire others.

The conversation underscores the need for persistence, passion, and collaboration in patient engagement and celebrates the positive trend of pharmaceutical companies increasingly valuing patient input in clinical trial design.

They also discuss emotional regulation for advocates and improved communication between patients, doctors, and pharma. Monica concludes with inspiration from young survivors who find humor in hardship.  

Emma shares her journey from a medical biochemist to a patient engagement professional, emphasizing the importance of empathy and strategic business practices in the pharmaceutical industry.

The discussion highlights the challenges and responsibilities of patient engagement professionals, the need for professionalization, and the evolving role of patient advocacy. Emma envisions a future where new leaders emerge within the ISPE community, fostering growth and development in patient engagement.

He shares insights on his role in bridging the gap between patients and the pharmaceutical industry, highlighting the importance of understanding patient needs and motivations. Rasmus also talks about the significance of change management in the pharma industry and the necessity of presenting a business rationale for patient engagement.

The conversation underscores the value of diverse perspectives and the impact of effective communication in fostering patient participation in clinical research.

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 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.

• 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!

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.

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.

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.