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Meeting The EFIC Regulations CC & PD Update- The RAMPART Trial January 6, 2010 Deneil Kolk MPH, MSWHSP CoordinatorUniversity of Michigan
CC - Geographical Community Public events/locations • State fairs • Street fairs • Health expo/conf/fairs • Hospital (lobby waiting room, ED patients) • Football games • Public libraries Existing meetings/groups • Places of worship • Senior centers • Employment fair • Rotary clubs • Neighborhood associations • Substance abuse centers • Homeless shelters Online/Telephone • Internet/website surveys • Telephone surveys
CC - Seizure Related Community Seizure Related Community: • Epilepsy Bowl-A-Thon • Epilepsy Walk • Epilepsy support groups • Epilepsy clinics • Epilepsy conferences • Epilepsy monitoring unit (hospital setting)
CC - Special Focus Parents/Teachers/Kids: • PTSA meetings • School health advisory councils • High school classrooms • A middle school awards breakfast Ethnicity/Race: • Latino Festival • NAACP Freedom Weekend • Root & Heritage Festival • African American Health Coalition • Latino Book & Family Festival • Chinese Health Coalition Meeting • Telephone survey Medical Professionals: • Hospital internal email survey • ED staff meetings • Medical conferences
Community Comments Common Comments & Questions “If it works, how long before it will be available?” “As long as patient safety and welfare is always the priority, I would support the study” “Hard to judge whether benefits outweigh the risks as all the information is not available. I suspect that this lack of knowledge is the reason for the study.” “That’s just progress. You have to have continuing study to have the best medications” “Without research such as this, there is no mechanism to move forward. It is the right thing to do.”
Community Comments Common Concerns “How does the medication know where to target in the brain?” “Alarm bells are going off in me. Maybe it’s because of lack of understanding. But, if my boy is having a seizure, I don’t want someone messing around with saline solution.” “My daughter suffers from epilepsy. Although I delight in the idea of finding a cure, I am apprehensive of researching someone without their consent” “Are the medics well trained?” “How do you know if someone is allergic to one of these medicines?” “What about drug allergies or interaction with these study medications?”
PD – Geographical Community Online/Print/TV/Radio Advertisements • Twitter • Facebook • Hub public relations website • Hub clinical research website • Hub Study website • Radio pod cast • Local news websites • National press release through PR newswire • Local major newspapers • Religious affiliated bulletins & mailings • Local TV (PSA & interviews) • Press releases • Public radio (PSA & interviews) • Billboards • City employee paycheck insert
PD – Geographical Community Brochure/Flyer/Poster Distribution • Local pharmacies • Buses (city bus posters) • Homeless shelters • Neurologist offices • Religious organizations Booth • Football games • Farmers markets • State fair • Street fair • Employment fair • Disabilities expo
PD - Seizure Related Community Online/Print Advertisements • EF Website – local chapter • EF Newsletter – local chapter • EF Mailing – local chapter • EF Email blast – local chapter Brochure/Flyer/Poster Distribution • TBI rehab clinics • Seizure clinics • EF centers - local chapter Booth • Brain Injury Association Conf. (local) • EF Conference • EF Walk & EF Stroll
PD – Special FocusRace/Ethnicity Print/TV Advertisements • African-American News & Issues Newspaper • Spanish language newspaper • Spanish language TV channel Booth • Latino Festival • Roots & Heritage Festival • Latino Book & Family Festival
PD – Special FocusMedical Professionals Presentations • Grand Rounds • EMS staff trainings Print/Online Advertisements • Hub internal email circular • EMS newsletter • Local Neurologist clinics (notification letter) Booth • Medical professional’s mtg./expo/conf. • Hub staff events
Public Disclosure Conclusion • 16 hubs have reported 245 total events • Ongoing PD events (Time & Cost effective) • Brochure/Flyer/Poster distributions at community centers, medical clinics, places of worship, etc. • Email circulars • Update presentations with groups attended during CC
Questions? Deneil Kolk (734) 232-2132 email@example.com