Addressing Barriers to Cancer Research Participation For Underserved Populations

Listen to this episode of People of Precision Health to learn about: 

• How to engage communities in health disparities research with underserved communities
•  A shift in thinking about how researchers should address health disparities research
•  How defining catchment areas can hold community hospitals accountable in their resourcing of cancer care and cancer research

 Learn about the Chickahominy TRUTH research project

Watch a video about the Chickahominy TRUTH project

Listen to this episode of People of Precision Health to learn about:

• Community approaches to address cultural disparities and underrepresentation in research 
• Understanding and addressing cultural challenges and other barriers to research participation
• How to create and nurture partnerships with research participants
• The value of diversity in the medical research community
• Many interesting use cases for technology in the research space
• Where precision medicine is going and how we can get there

Watch this episode of People of Precision Health to find out what makes a good health research survey, and learn about:  

• Common missteps in health survey data collection
• How to ensure the validity and reliability of survey questions
• Addressing survey fatigue / respondent burden
• Reasons for non-response and inaccurate answers
• Managing change to research surveys
• Selecting the right digital survey tools

For our fourth episode of People of Precision Health, Dr. Jai Patel at Atrium Health Levine Cancer Institute describes their pharmacogenomics program and how it folds into their activities in comprehensive cancer care and research activity. Listen now to hear insights on:

• Providing decentralized patient access to top-notch cancer care and research
• Integrating into cancer clinician workflows to enhance cancer patient experiences
• How distress screening and nurse navigators can improve outcomes
• Increasing access for clinicians and their patients to cancer research
• Standardizing cancer pharmacogenomics to support patients

On this episode of People of Precision Health, we sat down with Dr. Sofiya Milman, Associate Professor of Endocrinology and Genetics at Albert Einstein College of Medicine to talk about the SuperAgers Family Study. She discussed how she and her collaborators have cultivated several strategies and digital tools to power their recruitment, data collection, cross-institutional collaboration, and participant engagement. Listen now to hear insights on:

• Finding the right mix of recruitment strategies
• How recruiting family can help to engage elderly populations
• Why consent videos speed up the enrollment process
• How digital tools can increase research team effectiveness
• Creating a community for study participants to foster engagement

To learn more or to enroll in the SuperAgers Family Study, visit: https://www.superagersstudy.org/

In this episode of our People of Precision Health podcast series, guest Dr. Daniel Judge discusses the “In Our DNA SC” study, which focuses on sequencing the genes of South Carolina’s incredibly diverse patient population. Listen now to hear insights on:

• The nuances of good genetic counseling
• Navigating ambiguity in genetic testing
• Translating research discoveries into clinical practice
• How genetic testing could impact pharmacogenomics
• Prioritizing diversity to unlock greater population health insights

Learn more about the In Our DNA SC community health research project by visiting the Medical
University of South Carolina (MUSC) website here: https://web.musc.edu/inourdnasc

In the premiere episode of People of Precision Health, Howard McLeod of Intermountain Healthcare shares details from the HerediGene program, a study which seeks to sequence over 500,000 participants’ genes to better understand, predict, and prevent gene-related diseases. Listen now to hear insights on: 

• Building infrastructure for a population health sequencing study 
• Marketing the study to potential participants 
• How precision health and genomics research inform clinical care 
• Lessons learned about informed consent 
• How to best disseminate return of results 

Learn how the HerediGene program built a communications and patient data infrastructure to handle genetic sequencing and population health here: https://www.mdpi.com/2075-4426/12/11/1867