Unifying Research

In the fourth episode of Unifying Research, I sit down with an executive director of an HRPP at a leading academic medical center and research institution to discuss the difference between a Human Research Protection Program and an IRB. I also talk with a research participant who, after participating in several studies, has spent her career inside the research industry working to improve things based on her own experiences.My research expert guest is Adam McClintock, the Executive Director of HRPP at the University of Alabama at Birmingham. Adam has over two decades of experience in the research industry and shares some much needed guidance on the differences between an HRPP and an IRB. He explains the importance and encourages the industry to think about how we can start measuring effectiveness of our HRPPs.My research participant guest is Christine Melton-Lopez. Christine is a research expert herself, but before that, she participated in multiple research studies. She shares the good, the bad, and the ugly of her experiences participating in different studies through college and beyond. Her stories help illuminate that while research isn't perfect, it's still a very hopeful and meaningful endeavor. Christine shares some wonderful questions to ask when you're considering participating in a study. Additional resources:Connect with Adam McClintock on LinkedInConnect with Christine Melton-Lopez on LinkedInLearn more about the UAB Research ProgramLearn more about the AEREO program  Learn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeThe Patient ViewAAHRPP

In the latest episode, I speak with a research expert on the administrative side of running a program at a Cancer Clinical Trials Office. I also speak with a caregiver of someone in a research study.My research expert guest is Michelle Marcum, the Senior Director of Clinical Trials at the University of Cincinnati Cancer Center. Michelle discusses what it looks like to run a clinical trials program in an academic medical center and cancer center. She also shares how her program is managed through the lens of a mission-driven patient-first model.My patient guest this episode is unique. I speak with Brian Blackmon, a caregiver for a research participant. Better understanding the role of a caregiver in a research participant's experience is so important, yet there aren't many of these conversations taking place. Brian does a great job of explaining the challenges and opportunities for improvement for this vital role.Additional resources:Connect with Michelle Marcum on LinkedInConnect with Brian Blackmon on LinkedInLearn more about the University of Cincinnati Cancer Center Clinical TrialsThe Caregiver Action - a resource for caregivers of research participantsConnect with Univo to learn more about our mission and services  Learn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeThe Patient ViewAAHRPP

In season two, episode two of Unifying Research, I had the pleasure of sitting down with a research compliance expert and a wonderful patient willing to share her personal story. Our research expert this episode is Kate Cohen, a lawyer by training and Chief Compliance Officer at SIU Medicine. With a strong background in research compliance and human subjects protection, Kate helps us break down the silos between compliance, privacy and the role of the IRB.  Our patient guest this episode is Stephanie Gabriel. Stephanie shares her incredible journey dealing with PMDD, a misunderstood and often misdiagnosed disorder. Struggling from an early age, Stephanie never stopped looking for answers, which led to a research opportunity that ultimately changed the course of her life.  Additional resources:Connect with Kate Cohen on LinkedInThe Seven Elements of Compliance ProgramLearn more about HIPAA and ResearchConnect with Univo to learn more about our mission and services    Learn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeThe Patient ViewAAHRPP

In season two, episode one of Unifying Research, I had the pleasure of sitting down with a true research innovator and a rare disease patient with a fascinating story. Our research expert this episode is Kaye Doiron, an innovator and serial entrepreneur, who is helping to redefine how we think about clinical trials. Whether it's her Patient Negative One concept, or her new AI-driven tool for research sites, Kaye understands how to take novel ideas and make them reality. Our patient guest this episode is Christine Von Raesfeld. Christine is a rare disease patient who has used her lived experience, along with other advocates, as the foundation for the Patient AI Rights Initiative, which offers a clear framework to help individuals understand what the rise of AI means for autonomy, ethics, and trust.Additional resources:Connect with Kaye Doiron on LinkedInConnect with Christine Von Raesfeld on LinkedIn Learn more about Patient Negative OneLearn more about Research Works Inc.Learn more about the Light CollectiveCheck out the AI Rights for Patients InitiativeConnect with Univo to learn more about our mission and services  Learn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeThe Patient ViewAAHRPP

In the seventh episode of Unifying Research, I sit down with a clinical research leader to discuss the psychology of decision making in our industry. Then, I had the privilege of speaking with a unique research participant – someone who has participated in over 15 studies and has over 15 years’ experience working in the research industry. My research expert guest is Mitch Hible, the Founder and CEO of Diversitrials and Chief Strategy Officer at Clinical Research Pro. Mitch has two decades of experience in our industry and is a true entrepreneur at heart. As we discuss decision making in our industry, Mitch shares some great practical advice for all of us.The patient-side guest for this episode is Jess Thompson. Jess has been participating in research studies since college, and her experiences in each study have helped shape her career path in the research industry.  Additional resources:Connect with Mitch Hilbe on LinkedInConnect with Jess Thompson on LinkedIn Learn more about DiversitrialsLearn more about Clinical Research ProLearn more about the Clinical Research Justice League non-profitConnect with Univo to learn more about our mission and services  Learn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeAAHRPP

In this patient-centered episode of Unifying Research, I sat down with Bryan Soronson, a research administrator and expert for over four decades. After being diagnosed with Multiple Myeloma, Bryan eventually found his way into a clinical trial.Bryan shares his career, diagnosis journey and experience being in a trial, all with the grace and wisdom of someone who has spent their entire career improving the industry he ended up relying on.From talking about taking accountability for your own health, to the importance of patient advocacy, this is an encouraging and enlightening conversation that I know you will enjoy.Additional resources:Bryan is involved with all of these organizations through patient advocacy and coaching:Visit Healthtree.org for more information about how to help those with blood cancerLearn more about the International Myeloma Foundation, the first and largest global foundation focusing on multiple myeloma. Check out the Multiple Myeloma Research Foundation, the largest nonprofit focused on finding a cure for multiple myeloma.Blood Cancer United, formerly The Leukemia & Lymphoma SocietyLearn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeAAHRPP

In this special episode of Unifying Research, host Justin Osborne speaks with multiple attendees and the keynote speaker from the recent PRIM&R research conference to highlight the benefits of attending a conference in-person.Most research professionals don’t or can’t attend conferences, whether it’s due to budget, time or just a lack of awareness. In this episode, we highlight the types of conversations and themes that come from attending conferences in person.Justin also sat down after the conference with one of the keynote speakers, to highlight some of the themes and topics from his talk, while also covering larger issues facing our research industry as a whole.Connect with all of our guests!Jen Smith - Jennifer Smith, Ph.D. | LinkedInMike Linke - Michael Linke | LinkedInDawn Pittinger - Dawn N. L. Pittinger, DBA, MBA-HA, CHRC, CCP, CHC, CHA | LinkedInJeremy Levine - Jeremy Lavigne | LinkedInBruce Gordon - Bruce Gordon | LinkedInGeoff Schultz - Geoffrey Schultz | LinkedIn Devan Vaughn - Devan Vaughn | LinkedInJosh Fessel - Josh Fessel, MD, PhD, ATSF | LinkedIn Additional resources:Check out the "Research Ethics Reimagined" Podcast by PRIM&RLearn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeAAHRPP

In the fourth episode of Unifying Research, I sit down with a clinical research coordinator to discuss what it means to be a research coordinator. The job of a coordinator is one of the most important in our industry, yet most people don't fully understand or appreciate everything on a coordinator's plate. Then, I had the privilege of speaking with the President of a non-profit that provides flights to children in need of care. My research expert guest is Jen Powers, a research coordinator at the UC Gardner Neuroscience Institute at the University of Cincinnati. Jen has nearly 20 years of clinical care experience, with almost half of that being in a research coordinator role. Jen explains what a coordinator does as well as some of the major challenges of the role. The patient-side guest for this episode is Pat Nelli, the President and CEO of Children's Flight of Hope, a non-profit providing flights to essential, life-changing, and life-saving medical care for children in need. The work they do is extraordinary and it's refreshing to hear such passion coming from the president of a company doing this kind of work. Additional resources:"A Legacy of Care: Mother-Daughter Duo Making a Difference at UC Health" - an article about Jen PowersConnect with Pat Nelli on LinkedInCheck out Children's Flight of Hope websiteConnect with Univo to learn more about our mission and servicesLearn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeAAHRPP

In the third episode of Unifying Research, I sit down with a research expert to discuss the current state of Women's Health in research. It's a growing area of interest across all communities, and an important conversation. Then, I had the privilege of speaking with a research participant who shares her incredible journey through cancer research and life-saving treatments.My research expert guest is Yasmeen Long, a nationally recognized expert in biomedical research, health outcomes and patient advocacy. Yasmeen has managed research programs at Johns Hopkins, Mass General and Harvard, as well as being the former director of FasterCures with the Milken Institute. Yasmeen helps explain the scope of Women's Health in research and why this topic is so important.The patient-side guest for this episode is Mary Elizabeth Williams. Mary Elizabeth is an award-winning journalist, storyteller, consultant, speaker, author of two books, and currently a doctoral student of Medical Humanities. Mary Elizabeth shares her amazing journey through life-saving treatments in an oncology clinical trial. She also shares some thought-provoking insights into the problematic areas of research, from a participant's perspective. Additional resources:Connect with Yasmeen on LinkedinYasmeen Long's article for Diplomatic CourierLearn more about Mary Elizabeth WilliamsCheck out MEW's substackA Series of Catastrophes & Miracles - Book by Mary Elizabeth WilliamsConnect with Univo to learn more about our mission and servicesLearn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeAAHRPP

In the second episode of Unifying Research, I sit down with a research expert to discuss our current workforce crisis in clinical research. It's a complex and very timely problem that deserves our attention. Then, I had the privilege of speaking with a research patient advocate, who explains what patient advocacy is and why it's so important.My research expert guest is R'Kes Starling, an executive and entrepreneur with over 20 years of experience in the field. Not only does R'Kes shine a light on the current state of the clinical research workforce crisis, he also shares his opinions, wisdom and advice for those looking to break into our industry and those looking for a change. The patient-side guest for this episode is Ella Balasa. Ella was diagnosed with cystic fibrosis at 18 months old. She has used her personal healthcare experiences to drive change in patient empowerment, research, and healthcare strategies. Ella is inspiring and it was exciting to hear the important work she's helping to drive forward.Additional resources:Connect with R'Kes Starling - (1) R'Kes Starling, RPh, MBA | LinkedIn Learn more about the work Ella Balasa is doing - Ella Balasa | Patient Advocate and ConsultantConnect with Univo to learn more about our mission and servicesLearn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireChildren's Flight of HopeAAHRPP

In the first episode of Unifying Research, we discuss how evidence generation in research is evolving and what that means for the future of healthcare. Then, I have the privilege of speaking with a research participant to hear first-hand experience of someone who has been in a study for 15 years.My research expert guest is Brad Hirsch, the founder of Highlander Health and a driving force in the movement to reimagine evidence generation in research. The second conversation is with Mike Farrow, an incredibly brave and encouraging man, who shares his experience, opinions and wisdom with a vulnerability that will leave you feeling hopeful for the future. Additional resources:Learn more about Dr. Brad Hirsch - Brad Hirsch, MD | Highlander HealthConnect with Univo to learn more about our mission and servicesLearn more about Univo's partners working together to bring the patient's voice to research:Clinical Trials For AllSavvy CooperativeInspireAAHRPP