Unifying Research

In the sixth episode of season 2 of Unifying Research, I speak with Dr. Ann Kuo, MD. Dr. Kuo is a specialist in the field of Cancer Survivorship. She recently designed and ran a research study as the Principal Investigator (PI) at Scripps Health. We discuss the role of PI and what it means to be accountable for a study. Dr. Kuo walks us through the challenges and the joys of starting your own study and serving as a PI.

My research participant guest this episode is Andrea Dragan. A research expert herself in the compliance side of things, Andrea shares her story of being in a research study during COVID, while pregnant! The study was enrolling pregnant women specifically, which is one of the most challenging populations to enroll in research, from a regulatory perspective. Andrea opens up about what motivates her, why she participates in research, and her views about the future of research. 

Both conversations are incredibly fascinating, insightful and encouraging. I hope you enjoy listening to their stories as much as I did!

Additional resources:

• Connect with Dr. Ann Kuo on LinkedIn
• Connect with Andrea Dragan on LinkedIn
• Learn more about Dr. Kuo's work at Scripps

• Learn more about Univo's partners working together to bring the patient's voice to research:
• Clinical Trials For All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

In the fifth episode of season 2 of Unifying Research, I speak with a Muscogee Creek Native with Cherokee and Pawnee ancestry, who is working to bring tribal healthcare to the forefront of modern medicine. I also speak with a colleague of mine who shares her incredible story of cancer diagnosis and treatment, which recently led her to a research study opportunity that she explains was a life changer.

My research expert guest this episode is Kelsey Powell. Kelsey is the CEO and Founder of PARTNER BioResearch, which is focused on advancing a new model for clinical research for Native American patients, healthcare providers, and research sponsors. Kelsey explains the gaps and issues surrounding research in tribal healthcare areas. To say Native Americans are underrepresented in clinical research is an understatement, and Kelsey passionately shares the progress she's been making to improve research access.

My patient guest this episode is Michele Baptista. Michele is a research expert herself and shares her unique lens as a research participant. She openly and honestly shares her journey of cancer diagnosis, treatment, and recovery that eventually led to a research participant opportunity. Her story and her attitude are so encouraging, and she shares everything with a calmness that makes you want to keep listening. 

Additional resources:

• Connect with Kelsey Powell on LinkedIn
• Connect with Michele Baptista on LinkedIn
• For more information, data and stats on Tribal Health and research, visit the National Indian Health Board website
• Learn more about Not Our Native Daughters
• Learn more about MMIP
   
   
• Learn more about Univo's partners working together to bring the patient's voice to research:
• Clinical Trials For All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

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 LinkedIn
• Connect with Christine Melton-Lopez on LinkedIn
• Learn more about the UAB Research Program
• Learn more about the AEREO program
   
   
• Learn more about Univo's partners working together to bring the patient's voice to research:
• Clinical Trials For All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

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 LinkedIn
• Connect with Brian Blackmon on LinkedIn
• Learn more about the University of Cincinnati Cancer Center Clinical Trials
• The Caregiver Action - a resource for caregivers of research participants
• Connect 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 All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

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 LinkedIn
• The Seven Elements of Compliance Program
• Learn more about HIPAA and Research
• Connect 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 All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

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 LinkedIn
• Connect with Christine Von Raesfeld on LinkedIn 
• Learn more about Patient Negative One
• Learn more about Research Works Inc.
• Learn more about the Light Collective
• Check out the AI Rights for Patients Initiative
• Connect 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 All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

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 LinkedIn
• Connect with Jess Thompson on LinkedIn 
• Learn more about Diversitrials
• Learn more about Clinical Research Pro
• Learn more about the Clinical Research Justice League non-profit
• Connect 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 All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• AAHRPP

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 cancer
  • Learn 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 Society
• Learn more about Univo's partners working together to bring the patient's voice to research:
  • Clinical Trials For All
  • Savvy Cooperative
  • Inspire
  • Children's Flight of Hope
  • AAHRPP

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. | LinkedIn

Mike Linke - Michael Linke | LinkedIn

Dawn Pittinger - Dawn N. L. Pittinger, DBA, MBA-HA, CHRC, CCP, CHC, CHA | LinkedIn

Jeremy Levine - Jeremy Lavigne | LinkedIn

Bruce Gordon - Bruce Gordon | LinkedIn

Geoff Schultz - Geoffrey Schultz | LinkedIn 

Devan Vaughn - Devan Vaughn | LinkedIn

Josh Fessel - Josh Fessel, MD, PhD, ATSF | LinkedIn 

Additional resources:

• Check out the "Research Ethics Reimagined" Podcast by PRIM&R
  
  
• Learn more about Univo's partners working together to bring the patient's voice to research:
  • Clinical Trials For All
  • Savvy Cooperative
  • Inspire
  • Children's Flight of Hope
  • AAHRPP

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 Powers
• Connect with Pat Nelli on LinkedIn
• Check out Children's Flight of Hope website
• Connect 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 All
  • Savvy Cooperative
  • Inspire
  • Children's Flight of Hope
  • AAHRPP