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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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
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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

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Website: notjustpatients.com
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Email: info@notjustpatients.com

On this episode, we talk to Lilly Stairs about thriving in your career and managing your health while living with a chronic illness.

Lilly Stairs is an internationally recognized patient advocate, serial entrepreneur, philanthropist, and sought after speaker. Her purpose was ignited in a hospital bed after being diagnosed with multiple autoimmune diseases. She is the Founder of Patient Authentic, a boutique consultancy that helps healthcare organizations build events and experiences for patient advocates, and the Chronic Boss Collective, a networking membership for ambitious business women living with chronic conditions.

Join us as we talk about the challenges of navigating professional life for people living with chronic illness, the value they can bring with their 'secret sauce', and how employers can cultivate a more inclusive and supportive environment that allows people living with chronic illnesses to thrive in their careers.

Chapters:

0:00 - Introductions
1:40 - Lilly's personal story
7:46 - Career motivations for people with chronic illness
12:19 - Challenges to thriving in professional life
18:09 - Challenges for patient advocates
24:54 - Perceived challenges for employers
27:53 - Examples of workplace accommodations
29:35 - Benefits of employing people with chronic illness
35:39 - Career-focused initiatives for people with chronic illness
40:33 - Initiatives for employers to support employees better
46:51 - Advice for thriving in career while prioritising health
48:47 - Advice for employers
50:09 - Reflections with Caitlin and Clarinda

Resources mentioned:

• Autoimmune Association
• BCG (Boston Consulting Group) study on workplace accommodations for employees with disabilities
• Career and Chronic Illness by Michelle Irving
• Making Space by Keely Cat-Wells
• Chronically Capable
• Disability:IN
• Disclo
• Global Patient Advocacy Coalition for Headache initiative on Migraine Fitness at Work
• Journal publication on unprecedented productivity gains achieved through a migraine awareness program at the Japanese information technology company Fujitsu

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
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Email: info@notjustpatients.com

Join us for this special Rare Disease Day episode of Not Just Patients, where we speak with Jo Balfour, Managing Director and Co-founder of Cambridge Rare Disease Network (CamRARE), about research in rare disease.

Jo is the driving force behind the CamRare's innovative events program, designed to raise awareness about rare diseases and encourage cross-sector collaboration. She manages the organisation's Companies Forum, a networking and knowledge-sharing platform for pharma, biotech, and life science companies, and oversees all other aspects of the charity's research and project work. Additionally, Jo founded the charity's regional rare disease community, Unique Feet, bringing families together in an inclusive and supportive environment.

Listen to this insightful conversation where we discuss the unique challenges faced by people living with rare disease, overcoming barriers to rare disease research, and the value of collaboration between researchers and rare disease patient organisations.

Chapters

0:00 - Introductions
1:30 - Jo's journey into rare disease advocacy
7:07 - Challenges of living with a rare disease
11:34 - Challenges to rare disease research
15:58 - The numbers game and need for data
21:29 - Collaborating with patient organisations
28:10 - Navigating the rare disease advocacy landscape
40:12 - Initiatives supporting collaborative research
47:47 - Jo's dream for rare disease research
50:53 - Advice for researchers
51:14 - Advice for patient communities
53:50 - Reflections with Caitlin and Clarinda

Resources and abbreviations mentioned:

• UK Rare Diseases Framework
• CoRDS - Coordination of rare diseases at Stanford
• Duchenne UK
• PROMs - patient-reported outcome measures
• Rare Diseases International
• Global Genes
• EURORDIS
• Genetic Alliance UK
• Cystic Fibrosis Trust
• Cambridge Rare Disease Network (CamRARE)
• Department for Health and Social Care Disease Research Landscape Report
• RING 20
• Rare Disease Research Network
• Cambridge Rare Summit
• MRC - Medical Research Council, UK
• NIHR - National Institute for Health and Care Research, UK
• LifeArc
• Additional suggested: The Power of Being Counted

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Website: notjustpatients.com
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Email: info@notjustpatients.com

Join us for an insightful conversation with Maya Zlatanova, CEO and Co-founder of FindMeCure and TrialHub, as we discuss patient-aligned clinical trials that consider both scientific rigour and patient needs.

Maya is a health-tech entrepreneur and pharma industry speaker with over 15 years of experience in feasibility, operations, and patient recruitment and engagement. Guided by her strong sense of empathy and love of storytelling, Maya champions patient-aligned trial design and is passionate about improving the way clinical research is conducted.

This episode highlights the barriers patients face in accessing trials, the importance of awareness and education, and the benefits of improving clinical trial design to enhance patient experiences.

Resources and abbreviations mentioned:

• UK Clinical Trials Gateway
• FindMeCure
• TrialHub
• EUPATI - European Patients Academy on Therapeutic Innovation
• Maya's publication on a statistical model for quantifying patient experiences
• Clarinda's publication on patient journeys

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
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Email: info@notjustpatients.com

Join us for this special (unedited) recording of Not Just Patients, which was streamed LIVE on LinkedIn!

To celebrate our 10th episode, we were joined by two incredibly inspiring advocates, Danielle Drachmann and Sumaira Ahmed. Listen to this uplifting, raw, and real conversation as these two amazing women share how they turned their adversity into advocacy, and the unspoken realities of their deeply personal work.

About our guests:

Danielle Drachmann is a recipient of the 2022 Young Patient Advocate Award at the Black Pearl Awards, and Executive Director at Ketotic Hypoglycemia International. As a rare disease patient and mother of three children with a rare disease, she is deeply passionate about patient engagement, partnering, citizen science, and patient-driven research. At Evidera, part of Thermo Fisher Scientific, Danielle specialises in fostering multi-stakeholder relationships and advancing patient-centred research. Additionally, she contributes to various health committees and has helped shape Europe's rare disease policy through her work with EURORDIS.

Sumaira Ahmed was diagnosed with seronegative neuromyelitis optica spectrum disorder (NMOSD) in the summer of 2014, after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded The Sumaira Foundation (TSF) dedicated to generating global awareness of NMOSD, MOGAD and other rare neuroimmune conditions, building communities of support for patients and their loved ones, supporting research and advocating on behalf of patients. Sumaira currently serves as the Executive Director of The Sumaira Foundation.

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Website: notjustpatients.com
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Join us for a compelling conversation with Professor Lara Bloom, President and CEO of the Ehlers-Danlos Society. A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights.

Throughout our discussion, we dissect the complex relationship between health equity and inclusion on a global scale. The episode also explores the transformative power of patient engagement in achieving health equity, emphasising the importance of true representation and inclusion.

Chapters
00:00:00 - Introductions
00:01:20 - Lara's journey into advocacy
00:04:16 - State of DEI in healthcare
00:10:45 - Challenges viewed through a global lens
00:15:00 - Interplay between health equity and diversity & inclusion
00:17:40 - Understanding diverse communities and minorities
00:24:05 - Need for better representation in healthcare
00:29:09 - Evolution of DEI in healthcare
00:35:13 - Initiatives working to further DEI in healthcare
00:37:18 - Understanding privilege in the context of healthcare
00:40:42 - Mindset for overcoming challenges
00:44:03 - Future and advice for healthcare stakeholders
00:47:00 - Advice for patients and patient advocates
00:48:56 - Power of patient organisations
00:54:53 - Reflections with Caitlin and Clarinda

Resources and abbreviations

• Ehlers-Danlos Support Group (EDS UK)
• EDS - Ehlers-Danlos Society
• EDNF - Ehlers-Danlos National Foundation, US
• HSD – hypermobility spectrum disorders
• DEI - diversity, equity, and inclusion
• NHS - National Health Service, UK
• Global Genes conference
• CF – cystic fibrosis
• ESG – environmental, social, and governance
• World Health Assembly
• Global Patient Movement Catalyst
• EDS Road to 2026
• World Health Summit

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