Join us for this inspiring conversation with Urvashi Prasad as we discuss how patients can be involved in shaping healthcare policy.

Urvashi was a Director in the Office of the Vice Chairman at NITI Aayog, the Government of India's premier policy think tank, and co-authored India's first Voluntary National Review on Sustainable Development. She also contributed to the management of the Covid-19 pandemic in India, the implementation and monitoring of the Sustainable Development Goals, and the promotion of gender equality and social inclusion. With extensive experience and over 100 publications in public health and policy, she is passionate about improving the lives and well-being of people, especially the underserved and marginalized. Urvashi has been living with Stage IV ALK-positive lung cancer since 2022.

This episode explores what health policy is and how it is developed, advice on how patients can influence and leverage policy, and real-world examples of how this has been done.

Resources & abbreviations:

• ALK - Anaplastic lymphoma kinase
• EUPATI
• NGO - Non-governmental organisation
• Policy Brief on Alternative Financing for Cancer Care in India

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Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

This episode of Not Just Patients is all about the need for viewing patient engagement as a professional practice integral to healthcare, rather than just passion work.

Our expert guest today is Emma Sutcliffe, Chief Patient Officer at the International Society for Patient Engagement Professionals (ISPEP). Emma is one of the most cited and published experts in the field of patient engagement and patient sciences, with her most recent industry role as the Global Patient Officer at Ipsen. In 2024, Emma founded ISPEP -- the International Society for Patient Engagement Professionals -- which became the biggest organisation to align and elevate patient engagement practices in the sector. Her scientific pedigree is as a Medical Biochemist and she recently added to her clinical skill set by qualifying as a psychotherapist and counsellor. Emma also holds several board trustee positions with rare disease patient organisations.

Join us as we explore what it means to be a patient engagement professional (PEP), the movement towards professionalising patient engagement, career development for PEPs, and the power of professional communities.

Chapters

00:00:00 - Introductions

00:01:25 - Emma's journey into patient engagement

00:05:22 - Defining patient engagement

00:08:40 - Role of a Chief Patient Officer

00:12:45 - Careers in patient engagement

00:16:25 - The movement towards professionalising patient engagement

00:23:17 - The debate about lived experience

00:31:44 - Qualities of a patient engagement professional (PEP)

00:37:45 - Challenges PEPs face

00:41:55 - Training and career development

00:45:20 - Advice for patient advocates

00:49:50 - Reflections with Caitlin and Clarinda

Resources and abbreviations

• ISPEP – International Society for Patient Engagement Professionals
• ELT – Executive leadership team
• CPO – Chief Patient Officer
• SOP – standard operating procedure
• FMV – fair market value
• KCL – King's College London
• PFMD – Patient Focused Medicines Development
• EUPATI - European Patients' Academy on Therapeutic Innovation
• PEP - patient engagement professional
• PEP Talks series by ISPEP

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Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com

In celebration of our First Anniversary at Not Just Patients, we hosted a very special LinkedIn LIVE Podcast Takeover with Guest Host Joel Nelson on World Health Day, the 7th of April 2025.

An award-winning patient advocate who uses his story of psoriatic-associated juvenile idiopathic arthritis to inspire change, Joel is the Founder of Psoriatic Disease UK. He also hosts The Joel Nelson Podcast and The Chronic Pain Club Talk Show, where he facilitates conversations to help build a global community of peer support and awareness for patients and carers dealing with chronic conditions.

The live conversation had Joel put our hosts Caitlin and Clarinda in the hot seat and ask them tough and fun questions about themselves and the year that has been.

This conversation, published here without any edits, offers warm laughs and camaraderie and an insider view into what goes into running Not Just Patients, working together effectively, and our vision for the year ahead.

Chapters:

00:00:00 - Introductions
00:05:32 - Podcast origin, vision, and objectives
00:11:26 - Achievements and favourite things
00:17:20 - Challenges and lessons learned
00:26:12 - Working together effectively
00:36:35 - Looking to the future
00:41:13 - Quick fire and wrap up

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com