Not Just Patients

Caitlin and Clarinda

Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare.

We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more.

Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy.

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Health & FitnessHealth & Fitness

Episodes

Embedding Patient Perspectives into Clinical Research┃Robert Joyce
Jun 24 2024
Embedding Patient Perspectives into Clinical Research┃Robert Joyce
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 researcher8:10 - Benefits of patient involvement in research15:56 - Different ways patients can be involved in research23:08 - Role of country/disease-specific patient organisations25:08 - Challenges and initiatives for rare diseases27:37 - Initiatives to bring patients closer to research29:10 - Robert's story and personal challenges33:55 - Challenges to patient involvement35:44 - What needs to be done to overcome barriers44:22 - Engaging funders in patient involvement51:30 - Advice for patients looking to get involved53:01 - Advice for stakeholders looking to involve patients55:38 - Reflections with Caitlin and ClarindaHave feedback or suggestions for us? We'd love to hear from you!Website: notjustpatients.comLinkedIn: Not Just PatientsEmail: info@notjustpatients.com
Mobilising Meaningful Pharma-Patient Collaboration┃Bronwyn Lewis
May 20 2024
Mobilising Meaningful Pharma-Patient Collaboration┃Bronwyn Lewis
On this episode, we speak with Bronwyn Lewis, Global Head of Patient Engagement at Boehringer Ingelheim. 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)).Chapters00:00 - 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 ClarindaResources and abbreviations mentionedBoehringer 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 trainingHave feedback or suggestions for us? We'd love to hear from you!Website: notjustpatients.comLinkedIn: Not Just PatientsEmail: info@notjustpatients.com
History and Evolution of Patient Engagement ┃Tamás Bereczky
Apr 20 2024
History and Evolution of Patient Engagement ┃Tamás Bereczky
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 engagement7:13 - Evolution of patient engagement11:27 - Tamás' personal story18:15 - Faces and forms of advocacy22:28 - Landscape-shaping developments and initiatives26:31 - Challenges faced by Tamás and other advocates34:08 - Initiatives looking to overcome challenges38:03 - Need for cooperation across disease areas41:26 - Tamás’ current work49:10 - Expectations and hopes55:08 - Advice for patient advocates and healthcare stakeholders57:16 - Reflections with Caitlin and ClarindaResources and abbreviations mentioned: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 CarelHave feedback or suggestions for us? We'd love to hear from you!Website: notjustpatients.comLinkedIn: Not Just PatientsEmail: info@notjustpatients.com