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Gigi McMillan Executive Director We Can, Pediatric Brian Tumor Network wecan

Gigi McMillan Executive Director We Can, Pediatric Brian Tumor Network www.wecan.cc. Community-Campus Partnerships for Health and Tuskegee University National Center for Bioethics in Research and Health Care March 14, 2007.

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Gigi McMillan Executive Director We Can, Pediatric Brian Tumor Network wecan

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  1. Gigi McMillanExecutive DirectorWe Can, Pediatric Brian Tumor Networkwww.wecan.cc Community-Campus Partnerships for Health and Tuskegee University National Center for Bioethics in Research and Health Care March 14, 2007 Highlighting the Importance of the Non-Affiliated (Community) Member

  2. Ask other committee members to help Ask your IRB Administrator to help Ask for information about IRB/HSP conferences Be persistent Make specific, reasonable requests Take the initiative Follow up after any progress is made Document the changes/success How can a non-affiliated member change things for their own committee?

  3. “Community Members” want… • Training • Mentoring • Respect • Feedback • A sense of community

  4. Training • Historical perspective • General technical information • Specific skills for reviewing a protocol • Instruction on how to present their comments during a meeting • An understanding of how their specific IRB committee works

  5. Mentoring • New IRB members should be assigned to a veteran who will assist with first reviews and sit next to them during meetings to explain how a typical meeting is run.

  6. Respect • New members are often unsure of the value of their participation. It is the responsibility of the Chair and veteran members to encourage a new member’s involvement during their learning phase. A member who feels intimidated does not participate fully.

  7. Feedback • Many non-affiliated members are not sure what is expected of them. • They wonder if they are doing a good job. • Supplemental training is welcome.

  8. Sense of Community • Unaffiliated members do not have the built-in peer system of the other institutional committee members. • E-mail and phone contact should be encouraged. • Opportunities to network with other non-affiliated members should be provided (e.g.local gatherings or larger conferences).

  9. PRIM&R Conference 2006“Community Member Track” • History of Human Subject Protection • What does a “lay person” bring to the table?” • The Psychology of an IRB meeting • Exactly how do I review a protocol? • “Ask the Chair” • “Meet Your Peers” support group meeting

  10. Recruit, Train, Retain • Recruit from communities or organizations who have a personal desire to become involved. • Honor them with adequate training and support to do their job. • Keep them happy by offering respect and acknowledgement.

  11. Nurture their passion! Thank you.

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