TAG ARCHIVES FOR community engagement

18
May2018

The keynote address at PRIM&R's IACUC Conference by Alison Rockett Frase and Dr. Martin (Casey) K. Childers really should have come with a Kleenex alert! Those of us in attendance all know that research with animals can lead to major advances in treatment for a variety of health issues. Hearing Ms. Frase’s firsthand account of her son's battle with a rare neuromuscular disorder and Dr. Childer’s follow-up description of their search for a treatment or cure for centronuclear and myotubular myopathies was truly inspiring. If you’ve not yet seen the video about their journey please stop what you are doing, close your office door, grab a hankie and watch their video. I dare say there were very few dry eyes in the room at the end of their presentation at IACUC18, and there was a communal feeling of wanting to shout: “Yes, Yes, Yes! This is why we do what we do!” Read more

16
Aug2017

You are the director of human research protection at a community hospital. You have one IRB with seven members. Six of the members are physicians with staff privileges at your hospital. The seventh member, a representative from the community, just resigned from the IRB. Six qualified people have applied to fill the empty seat: a bioethicist, a minister, a former study participant, a community leader, a sociologist, and a member of a disadvantaged group served by the hospital. Because of a hospital policy that is set in stone, you can accept only one new IRB member. Read more

25
May2017

In early 2014, PRIM&R explored the topic of what we call individuals who volunteer for research in a post titled "What’s in a name? Research 'participant' versus research 'subject'." In this post, PRIM&R concludes that, on the whole, "subject" is the most appropriate title for those involved in research studies (recognizing, however, that in some instances "participant " may be appropriate; for example, in community-based participatory and participant-led research). Herein we present the contrasting points of view of three individuals. Read more