Love to listen or prefer to watch? For the first time, the video recording of this episode is available on our YouTube channel: https://www.youtube.com/watch?v=ansbXaF9B6c

Join us for the first in-person recorded episode of Not Just Patients!

We were so excited to be invited to the launch of the National PPI Festival in Dublin, organised by the PPI Ignite Network and the Royal College of Surgeons in Ireland (RCSI). Listen (or watch!) as we speak with our 3 amazing guests about their experiences of patient and public involvement (PPI) in research, from their differing perspectives of an early career researcher, a patient contributor, and a research group leader.

Guest profiles:
Dr Viveka Guzman is a Research Associate at Imperial College London. She is also part of the Patients Experience Research Centre, where she promotes participatory approaches and supports patients and the public to get involved in research. Before her current role, Viveka completed her PhD at RCSI through the SPHeRE Programme, where she collaborated closely with an advisory panel of five public contributors across several stages of the project.

Clíodhna Ní Bhroin has a degree in Botany, an MSc in Biodiversity & Conservation and also requalified in IT. In 2017 she had a stroke that changed the course of her life. Wanting to share her experience to improve the experience of those who came after her, Clíodhna took part in PPI through RCSI, and in 2020 she was invited to take part in the Improving Pathways for Acute STroke And Rehabilitation or (iPASTAR) PhD programme as a Patient Champion.

Professor Fergal O’Brien is Professor of Bioengineering & Regenerative Medicine, Deputy Vice Chancellor for Research & Innovation, and Head of the Tissue Engineering Research Group (TERG) in RCSI. In his innovative research, he combines cutting-edge bioengineering with meaningful PPI. Fergal’s team partnered with the Research Ireland Advanced Materials and Bioengineering Research (AMBER) Centre and the Irish Rugby Football Union Charitable Trust to co-design a novel spinal cord injury implant alongside a PPI advisory group of clinicians, researchers, and individuals living with spinal cord injury. This advisory group offered valuable insights into the realities of spinal cord injuries and possible treatment strategies. 

On this live episode of Not Just Patients, we explore PPI in practice and the transformational impact it can have on research itself and on all the people involved.

Chapters:

0:00 - Introductions

6:17 - Dr. Viveka Guzman: perspectives of an early career researcher

17:06 - Clíodhna Ní Bhroin: perspectives of a patient contributor

28:35 - Prof. Fergal O'Brien: perspectives of a research group and institutional leader

43:48 - Panel discussion

1:03:13 - Audience Q&A

1:11:19 - Advice for stakeholders looking to practice PPI better

1:15:02 - Summing it all up

Resources:

EUPATI - European Patients Academy on Therapeutic Innovation 

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

Patient advocate and engagement consultant Trishna Bharadia joins Caitlin and Clarinda to explore how advocacy can be supercharged by tapping into diverse channels, from niche community networks to public mass-media platforms that reach millions. 

Trishna works with multiple stakeholders to embed the patient voice into medicines development and healthcare. She's a visiting lecturer on patient engagement at the Centre for Pharmaceutical Medicine Research at King's College London and Co-Chair of the Working with Patients and Communities Forum at the Faculty of Pharmaceutical Medicine (FPM).

Trishna is also a patron and ambassador for several health and disability-related organisations, including the International Society of Medical Publications Professionals (ISMPP) and the Patient Information Forum. Her many awards include a Points of Light from the UK Prime Minister office for her work with patient communities and a Pharma Voice 100 honour for outstanding contributions to the life sciences. 

On this episode, Trishna shares fascinating stories of her multifaceted advocacy, from Strictly Come Dancing/Dancing with the Stars to radio, journals, social media, and getting her parents involved. She also offers excellent advice for getting started in advocacy, navigating criticism, and owning your story.

Chapters

• 00:00:00 - Introductions
• 00:01:46 - Trishna's journey into advocacy
• 00:08:02 - Importance of raising awareness
• 00:13:43 - Exploring different advocacy channels
• 00:21:05 - Strictly Come Dancing experience
• 00:30:05 - Normalising disability/chronic illness in mass media
• 00:33:36 - Caregiver/family involvement in advocacy
• 00:38:59 - Countering cultural and societal stigma
• 00:43:42 - Advice for other patient advocates
• 00:51:10 - Reflections with Caitlin and Clarinda

Resources and Abbreviations

• MS - multiple sclerosis
• MS Society
• Asian MS
• MS Society Stop MS Appeal
• ISPEP -International Society for Patient Engagement Professionals
• Patient Information Forum (PIF)
• NMO - neuromyelitis optica spectrum disorder

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

Join us for a thought-provoking conversation with Mark Doyle, as we explore the vital role of empathy in healthcare and how truly understanding the patient experience can drive better outcomes for patients, professionals, and organisations alike.

Mark Doyle is the founder of the award-winning, immersive patient experience company A Life in a Day.  He began his professional life as an actor and has spent the past 20 years applying his creative expertise to develop innovative learning programs. A Life in a Day is a unique, 24-hour simulation that provides participants the opportunity to walk in the shoes of a person living with a specific condition or illness, revealing the profound impact it could have on their own physical, social, and emotional wellbeing.

In this episode, we dive into the challenges of embedding empathy at an organisational level, the importance of understanding the patient experience holistically, and the power of storytelling in driving meaningful change. Mark also offers practical advice for healthcare stakeholders and patients alike, and shares his vision for a future where empathy is at the heart of every healthcare journey.

Chapters:

• 00:00:00 - Introductions
• 00:01:31 - The importance of empathy in healthcare
• 00:11:20 - Defining the holistic patient experience
• 00:20:49 - Mark’s journey from acting to healthcare
• 00:25:14 - The power of patient storytelling
• 00:27:50 - Experiencing ‘A Life in a Day’ of a patient
• 00:36:10 - Understanding the impact on carers and families 
• 00:42:28 - Co-creating simulations with patients and families
• 00:45:00 - Initiatives driving empathy in healthcare
• 00:48:38 - Mark’s long-term dream for empathy in healthcare
• 00:50:03 - Advice for embedding empathy in healthcare 
• 00:52:56 - Reflections with Caitlin and Clarinda

Resources & abbreviations 

• AI – Artificial Intelligence
• A Life in a Day
• Dementia Bus
• HTA – Health Technology Assessment
• MS – Multiple Sclerosis
• RSV – Respiratory Syncytial Virus
• VR – Virtual Reality

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

Join us for an empowering conversation with Estelle Jobson, EUPATI Fellow and patient expert living with endometriosis, about equipping patients for shared decision-making.

Estelle is a founding patient partner at Geneva University Hospitals (HUG) programme, PartnerREC, and a seasoned communications professional with an MSc in Publishing from NYU. With decades of experience supporting patient-centric research and serving as a patient reviewer for the British Medical Journal, Estelle brings a unique perspective on navigating the healthcare system and empowering patients to take charge of their medical journeys. 

In this episode, we dive deep into the concept of shared decision-making—what it really means for patients and providers, why it is so rare, and how it can transform healthcare outcomes. Estelle shares her personal story, highlights the barriers patients face, and introduces practical tools to help patients get the most out of their medical consultations. 

Chapters:

00:00:00 - Introductions
00:01:27 - Defining shared decision-making
00:08:35 - Estelle's story and motivations
00:15:47 - Importance of patient choice
00:20:21 - Barriers to shared decision-making
00:27:03 - Tools that aid shared decision-making
00:42:56 - A collaborative approach to lifestyle changes
00:46:55 - Estelle's dream for patient care
00:51:35 - Estelle's advice for patients and stakeholders
00:55:24 - Reflections with Caitlin and Clarinda

Resources and abbreviations:

• SBAR (Situation-Background-Assessment-Recommendation) 
• TeamSTEPPS (Team Strategies & Tools to Enhance Performance and Patient Safety) 
• Ready Steady Go Programme
• Ask Me 3 
• Not Just Patients episode with Dr. Victor Montori: Embracing Shared Decision-Making in Patient Care 

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

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

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

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

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

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: [email protected]

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
LinkedIn: Not Just Patients
Email: [email protected]

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

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

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
LinkedIn: Not Just Patients
Email: [email protected]