Episodes
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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 upHave 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 ClarindaResources mentioned:
Autoimmune AssociationBCG (Boston Consulting Group) study on workplace accommodations for employees with disabilitiesCareer and Chronic Illness by Michelle Irving Making Space by Keely Cat-WellsChronically CapableDisability:INDiscloGlobal Patient Advocacy Coalition for Headache initiative on Migraine Fitness at WorkJournal publication on unprecedented productivity gains achieved through a migraine awareness program at the Japanese information technology company FujitsuHave feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: [email protected] -
Episodes manquant?
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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 ClarindaResources and abbreviations mentioned:
UK Rare Diseases FrameworkCoRDS - Coordination of rare diseases at StanfordDuchenne UKPROMs - patient-reported outcome measures Rare Diseases InternationalGlobal GenesEURORDISGenetic Alliance UK Cystic Fibrosis TrustCambridge Rare Disease Network (CamRARE)Department for Health and Social Care Disease Research Landscape ReportRING 20Rare Disease Research NetworkCambridge Rare SummitMRC - Medical Research Council, UKNIHR - National Institute for Health and Care Research, UKLifeArcAdditional suggested: The Power of Being CountedHave 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.
UK Clinical Trials GatewayFindMeCureTrialHub EUPATI - European Patients Academy on Therapeutic InnovationMaya's publication on a statistical model for quantifying patient experiencesClarinda's publication on patient journeys
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: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 (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.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 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.
Ehlers-Danlos Support Group (EDS UK)EDS - Ehlers-Danlos SocietyEDNF - Ehlers-Danlos National Foundation, USHSD – hypermobility spectrum disordersDEI - diversity, equity, and inclusionNHS - National Health Service, UKGlobal Genes conferenceCF – cystic fibrosisESG – environmental, social, and governanceWorld Health AssemblyGlobal Patient Movement CatalystEDS Road to 2026 World Health Summit
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 abbreviationsHave 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, Dr. Anke-Peggy Holtorf joins us to help demystify the complex processes of regulatory affairs and health technology assessment (HTA) and explain the crucial role of patients in these processes.
HTA - Health Technology Assessment Reimbursement: the process by which healthcare providers are compensated/paid back for the medical services they provide, either by the government or through insuranceOut-of-pocket costs: when patients pay for their own medical costsFDA - US Food and Drug AdministrationEMA - European Medicines AgencyChinese FDA QALY - Quality adjusted life yearsWHO - World Health OrganizationNICE - National Institute for Health and Care Excellence, UKCF Trust - Cystic Fibrosis Trust EUPATI - European Patients' Academy on Therapeutic Innovation EUCAPA - European Capacity Building for Patients Anke's report on Patient Involvement in HTA in Europe - full report and short version
Anke acts as Secretary of the Board at Health Technology Assessment international and is a Steering Committee member and project coordinator for the Patient and Citizen Involvement in HTA Interest Group. She is co-editor of the 2nd edition of the book on Patient Involvement in HTA, which will be published in 2025. Anke has also taught graduate courses in International Health Policy, HTA, and the role of patient involvement.
Anke's global experience and depth of knowledge spanning decades shine through as she simplifies some highly technical and complex concepts for our listeners.
Chapters:
0:00 - Introductions
1:34 - Overview of regulatory affairs and HTA
6:48 - The regulatory approval process
12:09 - Patient involvement in regulatory affairs
22:19 - Overcoming barriers to patient involvement
27:32 - Regulatory success rates
30:30 - The HTA process
32:32 - Differences in healthcare models
36:46 - Factors evaluated in HTA
43:45 - Patient involvement in HTA
54:32 - Advice for patients and stakeholders
59:08 - Reflections with Caitlin and Clarinda
Resources and definitions: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 speak to Mark Duman, Chief Patient Officer at MD Healthcare, about digital health and health data, how digital therapeutics get developed and approved, and how challenges around access and equity can be navigated.
Mark is a clinician, management consultant, and patient advocate who works with several healthcare organisations to harness digital health, improve market access, and embed patient engagement in healthcare products and services.
Join us for this insightful conversation on a hot and rapidly evolving topic.
Chapters
0:00 - Introductions
1:47 - Mark's story
3:46 - Scope of digital health and health data
6:11 - Enhancing patient care
12:15 - Patient engagement
14:44 - Regulations and reimbursement
21:59 - Challenges around access and equity
28:55 - Development process and patient inclusion
37:35 - Data privacy and ethics
47:18 - Future of digital health
52:57 - Advice for patients/stakeholders
56:39 - Reflections with Caitlin and Clarinda
Cerner system for electronic health recordsQALY – quality-adjusted life yearsWALY – wellbeing-adjusted life yearsSalford Lung StudyPREMS – patient-reported experience measuresPROMS – patient-reported outcomes measures ABPI - Association of the British Pharmaceutical IndustryABHI - Association of British HealthTech IndustriesEUPATI Patient Engagement RoadmapDTA - Digital Therapeutics AllianceDIME – Digital Medicine SocietyNICE – National Institute for Health and Care Excellence, UKSleepioNesta reportCE MarkDTAC – Digital Technology Assessment CriteriaDTS (data security and protection) toolkitScotland’s Patient Experience ProgrammeFlatiron Health Patient Voices PanelGDPR - General Data Protection RegulationInformation Governance ToolkitsHMO - health maintenance organizationZOE StudyLloyd’s Bank Consumer Digital IndexPatient Innovation
Resources/abbreviationsHave 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 speak to Avishek Pal about how patients can better access and contribute to medical publications.
0:00 - Introductions1:48 - Patients' information-seeking patterns4:38 - Role of health literacy6:21 - Importance of accessing medical literature8:44 - Information overload & reliability15:24 - Plain-language summaries26:43 - Publication bias in medical research30:54 - AI for medical information39:25 - Patients as authors49:53 - Future of medical publications53:15 - Advice for different stakeholders56:44 - Reflections with Caitlin & Clarinda
In parallel to his day job as Global Medical Director of Cell & Gene Therapy at Novartis, Avishek is affiliated with the Institute for Biomedical Ethics at University of Basel, investigating how medical research information in plain language may improve health literacy and autonomy in patients with chronic diseases.
Join us as we discuss how patients seek medical information, the role of generative AI, and initiatives fostering better patient access and involvement in medical literature.
Chapters:Resources and abbreviations:
Cochrane LibraryPubmedGoogle ScholarCF - cystic fibrosis Avishek’s landscape analysis paper on plain-language resourcesFuture Science Group, now a part of Taylor & FrancisBecaris PublishingEnvision GroupA&E - accident and emergencyCF Trust - Cystic Fibrosis Trust NHS - National Health Service, UKCDC - US Centres for Disease Control and PreventionNIH - National Institutes of Health, USFDA - US Food & Drug AdministrationEMA - European Medicines Agency Chat-GPTAvishek's paper on ethical considerations for plain-language materialsEUPATI - European Patients’ Academy on Therapeutic InnovationPIF TICKDiscernICMJE (International Committee of Medical Journal Editors) authorship criteriaClarinda’s Patient Perspective paperCoalition SHave feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: [email protected] -
In this episode, we speak to Dr. Victor Montori about the importance of shared decision-making in healthcare.
Dr. Montori is the Robert H. and Susan M. Rewoldt Professor of Medicine at Mayo Clinic. An endocrinologist, health services researcher, and care activist, he is the author of more than 750 peer-reviewed publications and is among the most cited researchers in clinical medicine and in social science. He is a recognized expert in evidence-based medicine, shared decision making, and minimally disruptive medicine. He is also the author of the book Why We Revolt, and is leading a movement, a Patient Revolution, for Careful and Kind Care for all.
In our conversation, we discuss the need for patient-centred care that involves and respects individuals as holistic beings, the challenges that inhibit shared decision-making in practice, and the broader societal need to foster self-care and community support.
Chapters
0:00 - Introductions
1:40 - What is shared decision-making?
5:30 - Careful and kind care
9:24 - Forms of shared decision-making
14:58 - Victor's motivation
18:50 - How much time should doctors spend?
23:20 - Is shared decision-making for all patients?
27:15 - Who is responsible for shared decision-making?
31:28 - Where can clinicians learn shared decision-making?
35:46 - A Patient Revolution
44:25 - Barriers to overcome
50:08 - Tackling an insurmountable challenge
55:43 - Reflections with Caitlin & ClarindaHave 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 Robert Joyce about the critical role of patient involvement in clinical research and the various ways in which patients can bring rich perspectives to the research and development process.
Robert has lived with chronic illness all his life, but following a traffic accident in 2014, he was left with debilitating symptoms. No longer able to work, Robert started his blog, a 30 minute life, to share his experiences, and also has a podcast of the same name.
In 2019, Robert also became involved in clinical research, eventually earning the title of Embedded Patient Researcher and becoming a co-applicant on the trial of a therapy for Multiple Sclerosis. Unfortunately he was not permitted to continue in this role, but is now an advocate for more patients to be involved in research.
Chapters:
0:00 - Introductions1:25 - Role of an embedded patient researcher
8:10 - Benefits of patient involvement in research
15:56 - Different ways patients can be involved in research
23:08 - Role of country/disease-specific patient organisations
25:08 - Challenges and initiatives for rare diseases
27:37 - Initiatives to bring patients closer to research
29:10 - Robert's story and personal challenges
33:55 - Challenges to patient involvement
35:44 - What needs to be done to overcome barriers
44:22 - Engaging funders in patient involvement
51:30 - Advice for patients looking to get involved
53:01 - Advice for stakeholders looking to involve patients
55:38 - Reflections with Caitlin and Clarinda
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 speak with Bronwyn Lewis, Global Head of Patient Engagement at Boehringer Ingelheim.
00:00 - Introductions01:03 - Defining patient engagement from the industry perspective04:06 - Bronwyn's journey into patient engagement06:51 - The Patient Engagement function at Boehringer Ingelheim10:39 - Composition of Patient Engagement teams in pharma 13:22 - Aligning the motivations of pharma and patient groups16:42 - Barriers to pharma–patient collaboration20:23 - Justifying return on investment (ROI) 26:17 - Patient engagement touchpoints and activities29:16 - Matching best-fit patients to targeted activities 32:21 - Systemic integration of patient insights into all pharma operations 36:25 - Examples of patient insights influencing decisions38:28 - Boehringer Ingelheim's Global Patient Partnership Summit44:26 - Collaboration among industry stakeholders47:56 - Visualizing the future56:14 - Advice for patients and industry stakeholders 58:13 - Reflections with Caitlin and Clarinda
Drawing on her 20+ years of experience across diverse roles in the pharmaceutical industry, Bronwyn offers deep insights into how the industry is perceiving and responding to the call for deeper patient engagement, the challenges and opportunities for better multi-stakeholder collaboration, and her vision for the future.
Note: In the episode, Bronwyn mentions Boehringer Ingelheim’s Research & Development (R&D) investment data for the year 2022. In 2023, Boehringer Ingelheim’s R&D investments increased by 14.2% to EUR 5.8 billion. R&D investments were substantial, at 22.5% of net sales (source: Boehringer Ingelheim strong growth pipeline acceleration 2023 | Boehringer Ingelheim (boehringer-ingelheim.com)).
Chapters
Boehringer IngelheimCanadian Pulmonary Fibrosis FoundationIPF - Idiopathic pulmonary fibrosisPFMD - Patient-Focused Medicines DevelopmentEUPATI Connect ROI - Return on investmentHTA - Health Technology Assessment FDA - U.S. Food and Drug Administration EMA - European Medicines AgencyPFMD - Pharmaceuticals and Medical Devices AgencyGPPS - Global Patient Partnership SummitPatient Information ForumThe PIF TICKAtomic Habits by James ClearEUPATI Fundamentals training
Resources and abbreviations mentionedHave 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 Tamás Bereczky, PhD, about how patient engagement came to be, how it has evolved over time, and what the future will look like.
Living with HIV since 2003, Tamás is a stalwart in patient advocacy, serving on various boards and committees, such as the European AIDS Treatment Group and European Community Advisory Board on HIV. He also conducts and publishes academic research on patient involvement, including in R&D and HTA, and develops and delivers training on patient engagement for EUPATI.
Chapters:
0:00 - Introductions1:53 - Origins of patient engagement
7:13 - Evolution of patient engagement
11:27 - Tamás' personal story
18:15 - Faces and forms of advocacy
22:28 - Landscape-shaping developments and initiatives
26:31 - Challenges faced by Tamás and other advocates
34:08 - Initiatives looking to overcome challenges
38:03 - Need for cooperation across disease areas
41:26 - Tamás’ current work
49:10 - Expectations and hopes
55:08 - Advice for patient advocates and healthcare stakeholders
57:16 - Reflections with Caitlin and Clarinda
EUPATI - European Patients’ Academy on Therapeutic InnovationEATG - The European AIDS Treatment GroupEuropean Community Advisory Board ECDC - European Centre for Disease Prevention and ControlEMA - European Medicines AgencyFDA - U.S. Food and Drug Administration EPF - European Patients ForumIAPO - International Alliance of Patients' OrganizationsDeutsche AidshilfeEMIS - The European MSM Internet SurveyCORE - Community Response to End InequalitiesNICE - National Institute for Health and Care Excellence (UK)'Epistemic injustice' as explained by Prof. Havi Carel
Resources and abbreviations mentioned:Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: [email protected] -
In this pilot episode, we introduce ourselves, our ideas and aspirations for the podcast, and what you can expect to get from listening.
We are excited to bring this podcast to you and hope you enjoy it!
Resources mentioned in the episode:
- EUPATI Patient Expert Training ProgrammeHave feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: [email protected]
