Amplifying Participant Voices: Crafting Respectful, Inclusive, and Understandable Patient Materials

Webinar

Presented on: October 23, 2023

Learn how these panelists incorporate participant perspectives to craft patient-facing materials that are accessible, culturally competent, and easy to understand. Collecting feedback enhances engagement, empowers patients, improves communication, and addresses information gaps, paving the way for enriched participant experiences and improved health outcomes.

Additional Resources

MRCT Center Health Literacy Website
Health Literacy Resources for IRBs
Health Literacy Best Practices
Accessibility by Design Toolkit
MRCT Plain-Language Clinical Research Glossary
Including Young People in Clinical Research Toolkit
Webinar Panelist Bio Book

Returning Individual Research Results and Data: Digging Deeper into Genetic Results and Secondary Findings

Webinar

Presented on: September 21, 2023

Presented at: Virtual

The MRCT Center released a series of case studies describing research stakeholder experiences of returning individual results to participants at a recent webinar in May.  Given the interest and number of questions we received, we offered three virtual “Digging Deeper” sessions to foster additional discussion and learning about topics that can be challenging to navigate. 

This webinar was the third of the three webinars in the Digging Deeper series. Megan Frone of the National Cancer Institute discussed a case about returning genetic/genomic results and secondary findings.

Returning Individual Research Results & Data: Digging Deeper into Genetic Testing Secondary Findings webinar recording

Related Resources

ACMG/AMP Recommendations for Return of Secondary Findings
NASEM Returning Individual Research Results to Participants

Case Study: Responsibly Returning Secondary Findings
May 2, 2023 webinar: Returning Individual Research Results and Data to Participants
July 27, 2023 webinar: Digging Deeper into Pfizer’s Patient Data Return Solution
August 17, 2023: Digging Deeper into IRB/HRPP Responsibilities
Return of Individual Results website

Defining “recklessness” in research misconduct proceedings

Publication

Published on: September 5, 2023

Published in: Accountability in Research

Mark Barnes, co-faculty director of the MRCT Center and Partner at Ropes & Gray, colleagues Minal Caron and Sarah Dohan at Ropes & Gray, and Barbara Bierer addressed the definition of “recklessness” in research misconduct proceedings, reviewing its history and application, and proposing a framework and factors to consider in recklessness determinations.

Returning Individual Research Results and Data: Digging Deeper Webinar Series

Webinar Series

Presented on: July 27, August 17 and September 21, 2023

The MRCT Center released a series of case studies describing research stakeholder experiences of returning individual results to participants at a recent webinar.  Given the interest and number of questions we received, we offered three virtual “Digging Deeper” sessions to foster additional discussion and learning about topics that can be challenging to navigate.  

Returning of Individual Research Results and Data: Digging Deeper into IRB/HRPP Responsibilities

Webinar

Presented on: August 17, 2023

Presented at: Virtual

Related Resources

Case Study: IRB/HRPP Responsibilities
May 2, 2023 webinar: Returning Individual Research Results and Data to Participants
July 27, 2023 webinar: Digging Deeper into Pfizer’s Patient Data Return Solution
Return of Individual Results website

Review of diversity, equity, and inclusion by ethics committees: A Delphi consensus statement

Publication

Published on: August 11, 2023

Published in: Med (Cell Press)

Description: Laura Meloney, Hayat Ahmed, and Barbara Bierer coordinated a modified Delphi process to establish consensus on recommendations for IRBs/ethics committees and institutions to promote diversity and inclusion in interventional clinical research. In this paper, they discuss the 25 consolidated recommendations across four themes.