The Consumer Advocacy Committee provides valuable patient and donor perspectives for the development of the CIBMTR research agenda.
Responsibilities
- Provide a consumer perspective on the CIBMTR research agenda through participation in Working Committees and RCI BMT
- Provide input to CIBMTR on adapting hematopoietic cell transplantation (HCT) research publications for use by the general public
- Promote awareness among patients regarding research opportunities
- Advise the CIBMTR on ways to increase patient participation in research
- May submit research ideas to appropriate Working Committees
Membership
Members are appointed by the Advisory Committee, based on recommendations from a CIBMTR application review panel, and include:
- Nine voting members who serve for up to two consecutive three-year terms. These members are involved with HCT either as a patient, caregiver, family member, donor or staff person/volunteer with an agency that interacts with HCT patients or donors
- Ex-officio members from CIBMTR, the National Marrow Donor Program® (NMDP)/Be The Match® and the Health Resources and Services Administration (HRSA)
In addition, committee membership strives to represent a diversity of backgrounds, including persons who:
- Understand adult and/or pediatric HCT issues
- Are familiar with cord blood transplantation
- Have been or understand the needs of a related and/or unrelated donors
- Understand issues that affect access to or outcomes of HCT secondary to demographics and diversity
- Do not have access to the Internet, or are aware of how people without access to the Internet get their information
- Are actively involved in HCT-related research
- Have marketing, communications or professional writing experience
Meetings
- The Consumer Advocacy Committee meets annually at the BMT Tandem Meetings and periodically via conference calls
- Works on CAC projects, beyond teleconferences, as needed
| Co-Chairs |
|---|
| Jeffery Haertling | Tierra Verde, FL |
| Hilary Hall | Dana Farber Cancer Institute, Cambridge, MA |
| Members |
| Jack Aiello |
San Jose, CA |
| Maureen Beaman | Milwaukee, WI |
| James Omel, MD | (retired professional) Grand Island, NE |
| Kristin Scheeler |
Leukemia & Lymphoma Society, White Plains, NY |
| Jennifer Wilder |
National Institutes of Health, Bethesda, MD |
| Scientific Director |
| J. Douglas Rizzo, MD, MS |
CIBMTR, Milwaukee, WI |
| Ex-Officio |
| Linda Burns, MD |
NMDP/Be The Match, Minneapolis, MN |
| Jeffrey Chell, MD |
NMDP/Be The Match, Minneapolis, MN |
| Dennis Confer, MD |
CIBMTR, Minneapolis, MN |
| Ellen Denzen, MBA, MS |
NMDP/Be The Match, Minneapolis, MN |
| Carol Doleysh, BS |
(CIBMTR liaison) CIBMTR, Milwaukee, WI |
| Rebecca Drexler, BS, AAS |
CIBMTR, Minneapolis, MN |
| Jessica Gillis-Smith, MPH |
CIBMTR, Milwaukee, WI |
| Shelley Grant, MHSA |
Health Resources and Services Administration, Rockville, MD |
| Mary Horowitz, MD, MS |
CIBMTR, Milwaukee, WI |
| Elizabeth Murphy, EdD, RN |
(NMDP liaison) NMDP/Be The Match, Minneapolis, MN |
| Christine Nishiguchi, MS, MPH |
Health Resources and Services Administration, Rockville, MD |
| Bronwen Shaw, MD, PhD |
CIBMTR, Milwaukee, WI |
| Patricia Steinert, PhD, MBA |
CIBMTR, Milwaukee, WI |