Human Research Protections Clubhouse

Event Date:  February 22, 2023

Session Overview:

Community and patient partners are often included in research projects as co-investigators, recruiters, data collectors and team members responsible for obtaining informed consent. These individuals require training in human research protections, but standards programs may not always be the best fit.

At this session you will learn about two unique (and free) research ethics training programs – CIRTification and Research Ethics For All – developed specifically for (and with) community partners.

Learning Objectives:

After attending the sessions, attendees should be able to:

1. Describe the unique training needs of community research partners (individuals with no previous research background who will be engaged in recruitment, informed consent, data collection/analysis and/or dissemination of research findings).
2. Discuss some of the unique ethical dilemmas that community research partners face in doing their work.
3. Identify and implement resources for training community research partners.

Speakers:

Emily E. Anderson, PhD, MPH, Professor of Bioethics, Loyola University Chicago, Stritch School of Medicine

Emily developed CIRTification: Community Involvement in Research Training (available free online in English, Spanish, and Haitian Creole) after working for several years on community engaged research projects and studying research ethics during her PhD program. Her research and scholarship focuses on, among other things, developing accessible research ethics education and thinking about ways to engage public perspectives in discussions and decisions about what makes research ethical. She has served on 5 different IRB over the past 20 years.

Katherine McDonald, PhD, FAAIDD, Senior Associate Dean of Research & Administration, Syracuse University, Falk College of Sport and Human Dynamics

In collaboration with Ariel Schwartz at the University of New Hampshire and a national group of stakeholders, Katie developed Research Ethics for All, disability-accessible research ethics education for community research partners with developmental disabilities. Katie uses socio-ecological theory and community-engaged research to promote the inclusion of adults with disabilities in research as research partners and research participants to advance new knowledge to promote social and health equity. Katie has served on 3 different IRBs and is Chair of the IRB at Syracuse University.

Moderators:

• Sherry Cheng
• Heather Miller, PhD, CIP
• Satish Veerla, MS, PharmD

Recording Duration:  1 hour of insightful exchange and discussion.

Register here to watch on demand. 

Passcode: 9=6*eDaR 

Event Date:  January 10, 2024

Session Overview: In this HRP Clubhouse event, we held engaging discussions around human research protections, IRB responsibilities, Institutional responsibilities, and special interests.  

Lead Moderator:

• Joel Seah, BSc

Co-Moderators:

• Hallie Kassan, MS, CIP
• Heather Miller, PhD, CIP
• Kevin Nellis, MS, MT(ASCP), CIP
• Satish Veerla, MS, PharmD 

Thank you for your commitment to promoting ethical research practices and safeguarding the well-being of research participants. We look forward to your presence at this important event.

Register here to watch it on demand.

Passcode: @?2OT=r. 

The HRP Clubhouse Board of Advisors hosted our exclusive Lunch Networking Session at the National PRIM&R Conference onTuesday, December 5th from 11:30 AM to 1:00 PM.  This was a remarkable chance to connect and network with fellow professionals in person.   

Thank you to all who were able to attend.

Event Date:  November 28, 2023

The Human Research Protection Clubhouse held an engaging and insightful Zoom webinar featuring the esteemed Harry C.S. Wingfield, the author of “Human Subjects Research: An Insider’s View.” This event was tailored for IRB and HRPP professionals, students, investigators, and our valued members of the patient community, who champion ethical research practices.

Why You Should Review the Recording:

• Connect with a community of peers dedicated to ethical research practices.
• Gain valuable insights from Harry’s vast wealth of knowledge from an illustrious career spanning pivotal roles within the research ethics realm, including Student Researcher, Research Participant, Community and National Advocate, Activist, Clinical Regulatory Coordinator, IRB Technical Writer, Senior IRB Staff, and Retiree.
• Participate in a vital conversation about the evolution of the research process and the research enterprise.
• Take part in an open dialogue on enhancing community advisory boards, prioritizing impactful research, and optimizing resources.
• Voice your perspectives, network with peers and empower each other while contributing to the collective mission of advancing human research protections.

Featured Speaker:

• Harry C.S. Wingfield, ABJ, MFA, CIP, author of “Human Subjects Research: An Insider’s View.”
• Click here for Harry's Bio

Moderators:

• Heather Miller, PhD, CIP (she/her)
• Satish Veerla, MS, PharmD (he/him)

Recording Duration:  1 hour of insightful exchange and discussion.

Post Session Resources:

• PowerPoint Slides
• Recorded presentation

Important note about the recording:  If you have not already registered or if you are using a new device, Zoom may prompt registration for the event.  Once registered, enter the passcode: o0y34+r8 

Event Date:  October 31, 2023

Session Overview:

During this engaging and informative session, we explored the impact of gendered language on the participation of LGBTQIA+ individuals in research. Gendered language appears in the regulations, particularly in Subpart B.  Gendered language is also common in participant-facing materials, such as consent forms. This session illustrated how such language both introduces ambiguity in how regulations are applied, as well as negatively impacting the experience of LGBTQIA+ research participants.  

Thank you for celebrating Halloween with us, to those who helped contribute to the success of this event, and for your commitment to promoting ethical research practices and safeguarding the well-being of research participants.

Key Discussion Points:
• The need for inclusive language in regulations and participant-facing materials
• The real impact of gendered language on the lived experiences of LGBTQIA+ research participants

Featured Panelists:
• Nyssa Towsley, MS, CIP (they/she)
• Ronnie Lichtman, CNM, LM, PhD, FACNM (she/her)
• Michelle Burgett-Moreno, MS (she/her)
• Kevin Nellis, BS, MS, MT(ASCP), CIP (he/him)

Moderators:
• Heather Miller, PhD, CIP (she/her)
• Satish Veerla, MS, PharmD (he/him)

Post Session Resources:

• PowerPoint presentation (PDF Version)
• Recorded presentation

Important note about the recording:  If you have not already registered or if you are using a new device, Zoom may prompt registration for the event.  Once registered, enter the passcode: 60&!Le+i

• Resources listed in PowerPoint slides:

  • Glossary of LGTQIA+ terms

  • Training on SOGI(sexual orientation and gender identity) data collection

  • Best practices for SOGI data collection in surveys(Williams Institute)

• • LGBT Parenting
• Hypothetical definitions from survey
• Downstate IRB Guidance and Forms discussed during the session:

Note:  The plan is to update these documents after the survey research is completed.

• • Enrolling or Excluding Pregnant People, Contraception, Pregnancy Testing, and Partners of Participants Who Become Pregnant
  • Form 11-8: Exclusion of Pregnant People and/or Plans to Study Outcomes of Unexpected Pregnancies
  • Form 11-9: Research involving Pregnant People and/or Fetuses
  • 8-1: Simple Version Informed Consent Template
  • 8-2: All-In-One Version Informed Consent Template
  • 8-9: Pregnancy Follow-Up Consent