Publication
Published on: September 1, 2021
Published in: American Academy of Pediatrics
Focus Area: Clinical Trials & Research
Health Literacy Resources by Role: IRB
Toolkit
Developed on: August 2021
Developed by: MRCT Center Health Literacy Workgroup
Related Resources
Additional Resources, maintained on our project specific
Health Literacy website:
In Journal of Clinical and Translational Science: “Fair payment and just benefits to enhance diversity in clinical research” by MRCT Center colleagues
MRCT Center Faculty Director Barbara Bierer, Executive Director Sarah White, Senior Advisor Luke Gelinas, and Senior Advisor David H. Strauss, authored an article in the Journal of Clinical and Translational Science on “Fair payment and just benefits to enhance diversity in clinical research.”
Link to article.
MRCT Center Driving Inclusion in Clinical Research webinar: Simplifying the Complexity of Translation in Clinical Research
Webinar Presentation
Released on: July 14, 2021, 11:00 AM.-12 noon. EDT
Discussion Topic: MRCT Center Driving Inclusion in Clinical Research webinar: Simplifying the Complexity of Translation in Clinical Research
Presented at: MRCT Center Leaning In Webinar Series
Moderated by MRCT Center Faculty Director, Barbara Bierer, with guest speakers:
- Megan Kasimatis Singleton, JD, MBE, CIP, Associate Dean, Human Research Protections; Director of the Human Research Protections Program, Office of Human Subjects Research, Johns Hopkins University School of Medicine
- María José Reyes, MD, Internal Medicine and Infectious Diseases, Medical Director, PanAmerican Clinical Research
- Ann E. Taylor, MD, Chief Medical Officer, AstraZeneca
Webinar
Presentation Slides
See related webinars, maintained on our project specific Diversity, Inclusion, and Equity in Clinical Research website:
October 14, 2020: Community Awareness, Access, Knowledge
October 28, 2020: Workforce Development
November 18, 2020: Study Design, Eligibility, Site Selection, & Feasibility
December 9, 2020: Study Conduct (Recruitment, Retention)
January 13, 2021: Data Standards and Analysis
January 27, 2021: Stakeholder Roles and Responsibilities
February 10, 2021: Role of Data in Diversity: Genetics & RWD
May 12, 2021: Inducement or Fair Compensation? Impact on Diverse Participation
June 9, 2021: Improving Inclusion of Persons with Disabilities in Clinical Research
Dr. Barbara Bierer in ASH Clinical News “Breaking Down Barriers, Building Up Trust”
ASH Clinical News spoke with MRCT Center Faculty Director, Dr. Bierer about the lack of inclusivity in clinical trials, its implications, and efforts to strengthen the applicability of clinical trial results.
Pediatric engagement in research: Young people have a voice
Presentation
Released on: June 29, 2021
Presented at: DIA 2021 Global Annual Meeting (Virtual)
MRCT Center Driving Inclusion in Clinical Research webinar: Improving Inclusion of Persons with Disabilities in Clinical Research
Webinar / Presentation
Webinar: June 9, 2021, 11:00 AM.-12 noon. EDT.
Discussion Topic: MRCT Center Driving Inclusion in Clinical Research webinar: Improving Inclusion of Persons with Disabilities in Clinical Research
Moderated by MRCT Center Faculty Director, Barbara Bierer, with guest speakers:
- Tinamarie Duff, Global Lead: People and Business Resource Group for DAWN (Differently-Abled Workplace Network) at Bristol Myers Squibb
- Julie Sowash, Executive Director, Disability Solutions; Co-Host, Crazy and The King Podcast; DEIB Lead, Ability Beyond
- Michael Stein, Professor; Executive Director, Harvard Law School Project on Disability
Webinar
Presentation Slides
MRCT Center Driving Inclusion in Clinical Research webinar: Inducement or Fair Compensation? Impact on Diverse Participation
Webinar Presentation
Webinar: May 12, 2021, 11:00 AM.-12 noon. EDT.
Discussion Topic: The MRCT Center Driving Inclusion in Clinical Research webinar: Inducement or Fair Compensation? Impact on Diverse Participation.
Moderated by MRCT Center Faculty Director, Barbara Bierer, MD and with guest speakers:
- Luke Gelinas, PhD, Senior Advisor at the MRCT Center and Chairperson at Advarra IRB
- Melissa Gonzales, PhD, Inclusion Principal, External Partnering in the Chief Diversity Office at Genentech
- J. Leonard Lichtenfeld, MD, MACP, Medical Oncologist and former Deputy Chief Medical Officer for the American Cancer Society
- Joseph Liss, JD, Associate at Ropes & Gray, LLP
Webinar
Presentation Slides
Applying Health Literacy Principles to Clinical Research Studies: A Three-part Health Literacy Training
In the Spring of 2021, Sylvia Baedorf Kassis, MPH, Program Manager, facilitated a successful three-part virtual training entitled “Applying Health Literacy Principles to Clinical Research Studies” for clinical research professionals across the University of Utah.
The training covered:
- Health Literacy 101: The focus of this session was on the ethics/principles of health literacy as applied to the entire clinical research life cycle, including an introduction to co-developing materials with participants.
- Health Literacy in Action: The focus of this session was to expand on health literacy introduction to give specific examples of health literacy best practices applied to different types of research, including interventional and socio-behavioral studies. This session also included information on integrating participant feedback into the development and materials at various points across the clinical research life cycle (e.g., recruitment flyers, consent process, study questionnaires, study instructions, processes for pediatric studies, end of study communications).
- Health Literacy and Returning Research Results: This session focused specifically on managing and sharing aggregate research results (i.e. plain language summaries) with study participants and the community. Considerations for individual return of results were also introduced.
MRCT Center Driving Inclusion in Clinical Research webinar: How to Begin
Webinar Presentation
Webinar: April 14, 2021, 11:00 AM.-12 noon. EDT.
Discussion Topic: The MRCT Center Driving Inclusion in Clinical Research webinar: How to Begin. Moderated by MRCT Center Faculty Director, Barbara Bierer, MD. Our guest speakers were Anya Harry, MD, PhD, Head, Global Demographics & Diversity at GlaxoSmithKline and Christopher Romero, MD, PhD, FACP, Medical Director, USA, at PanAmerican Clinical Research.
