Deneil Kolk MPH, MSW HSP Coordinator University of Michigan Meeting The EFIC Regulations CC & PD Update - The RAMPART Trial January 6, 2010.

Deneil Kolk MPH, MSWHSP Coordinator

University of Michigan

Meeting The EFIC Regulations CC & PD Update - The RAMPART Trial

January 6, 2010

Summary of CC Events

CC - Geographical CommunityPublic 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 CommentsCommon Comments & Questions“If it works, how long before it will be available?”

“As long as patient safety and welfare is always the priority, I wouldsupport the study”

“Hard to judge whether benefits outweigh the risks as all theinformation is not available. I suspect that this lack of knowledge is thereason for the study.”

“That’s just progress. You have to have continuing study to have thebest medications”

“Without research such as this, there is no mechanism to moveforward. 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 ofunderstanding. But, if my boy is having a seizure, I don’t want someonemessing around with saline solution.”

“My daughter suffers from epilepsy. Although I delight in the idea offinding a cure, I am apprehensive of researching someone without theirconsent”

“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?”

CC Conclusion

CC Conclusion

Summary of PD Events

PD – Geographical CommunityOnline/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 CommunityOnline/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 ProfessionalsPresentations• 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 protected]