|
|
 |
 |
|
|
The National Cancer Institute (NCI) offers the following programs to involve advocates:
· Consumer Advocates in Research and Related Activities (CARRA)
· Director's Consumer Liaison Group (DCLG)
· Specialized Programs of Research Excellence: Patient Advocate/Research Team (SPORE PART)
CARRA Program
Consumer Advocates in Research and Related Activities
What Is the CARRA Program?
The NCI created the Consumer Advocates in Research and Related Activities (CARRA) program to encourage people affected by cancer to provide their
viewpoint and ideas directly to NCI staff so that the NCI can incorporate this perspective into their programs and activities.
What are the goals of the CARRA program?
Two CARRA program goals were established in order to provide a clear focus for program development and to ensure accountability for program outcomes:
1. Increase opportunities for CARRA members to provide input to NCI’s research activities involving scientific research and communication of scientific research.
2. Help foster an organizational atmosphere that values the perspectives and contributions of consumer advocates through the involvement of CARRA members in NCI activities.
Who can apply to become a member of the CARRA program?
Individuals who are cancer survivors, or are family members or partners of cancer survivors, or have more than 3 years of involvement in cancer-related activities and:
Can represent the viewpoint of other cancer survivors or their family members
Can make a 3-year commitment to participate in one or more activities from home and/or in the Washington, DC area
Have at least a high school degree and are fluent in English
What activities are CARRA members asked to participate in?
NCI staff members have requested the participation of CARRA members in their activities more than 180 times since the start of the CARRA program in September 2001.
About 2/3 of these activities have involved the participation of CARRA members in the peer review process. During peer review activities, CARRA members have served
as advocate reviewers for cancer research grants, where they have helped to evaluate human subjects concerns and other issues important to patients.
CARRA members have also provided their perspective to NCI through activities such as:
Development and review of cancer education pamphlets, videos, or Web sites
Attendance at NCI workshops and conferences
Participation on steering committees for research initiatives
Web Site Address: http://la.cancer.gov/carra
DCLG
Director's Consumer Liaison Group
What is the NCI DCLG?
The DCLG, chartered in 1997, is a Federal Advisory Committee that advises the Director of NCI on a wide variety of issues, programs, and research priorities from
the cancer advocate’s perspective. It is the only all-consumer advisory committee at NCI. The DCLG consists of 15 individuals who collectively reflect the diversity
among those whose lives are affected by cancer. DCLG members are appointed for four-year terms.
What are the goals of the DCLG?
The goals of the DCLG are to:
Assist in developing and establishing processes and criteria for identifying appropriate consumer advocates to serve on a variety of NCI program and policy advisory committees.
Serve as a primary forum to discuss issues and concerns and exchange viewpoints that are important to the broad development of NCI program and research priorities.
Provide recommendations to the Director, NCI, in response to specific advice and requests from the Director, NCI, and to the needs of the cancer advocacy community.
Establish and maintain strong collaborations between NCI and the cancer advocacy community to reach common goals.
Who can apply to become a member of the DCLG?
Individuals may apply to become a member of the DCLG who represent cancer advocacy organizations and are cancer survivors, the family members or partners of
cancer survivors, or are otherwise involved cancer-related activities and:
Have leadership experience in their organizations and communities
Have strong decision-making, communication, and collaborative skills
Have knowledge of current issues in cancer research
Are willing to attend meetings and actively participate on working groups and subcommittees.
What activities are DCLG members asked to participate in?
DCLG members are asked to provide the cancer patient’s perspective on a variety of NCI program and research priorities. During 2003-2005, the DCLG will focus on cancer survivorship and reducing of cancer health disparities.
Web Site Address: http://deainfo.nci.nih.gov/ADVISORY/dclg/dclg.htm
SPORE PART Program
Specialized Programs of Research Excellence: Patient Advocate/Research Team
What is the SPORE PART Program?
The PART Program integrates patient advocates that are willing to focus their attention on helping the NCI-funded Specialized Program of
Research Excellence (SPORE) research programs translate their research into practical use for people. There are 52 SPORE programs in
specific diseases (brain, breast, colon, GI, GU, gynecologic, head & neck, leukemia, lung, lymphoma, myeloma, ovarian, pancreas, prostate, skin)
located in academic institutions throughout the U.S. These SPOREs connect many disciplines, including basic, epidemiological, and clinical scientists,
together to plan, design and implement research programs that have an impact on cancer prevention, detection, diagnosis, treatment and control.
What are the goals of the PART Program?
There are 4 main goals of the PART Program: Help SPOREs develop local Patient Advocate/Research Teams (PARTs) Connect local PARTs together to
share information Identify common SPORE issues, and help to resolve them Help build resource banks for clinical trial delivery.
Who Can Apply to be a SPORE Patient Advocate?
A patient-focused individual (either a cancer survivor or family member) who is willing to make a personal commitment to work directly with cancer
researchers within a local SPORE program.
What activities can SPORE Patient Advocates get involved in?
SPORE Patient Advocates can become involved in many opportunities, depending on what the needs of their particular SPORE are, and the interests that
each patient advocate has. Some of the opportunities fall into these categories:
Attend and participate in research discussions and strategy meetings
Hold 2-way educational sessions for patient and research communities
Brainstorm on ways to improve the clinical trial system for participants
Help identify barriers that keep SPORE research from moving forward, and participate in steps to resolve these issues
Learn why tissue is important to researchers and patients, and help researchers get more of what they need while respecting privacy issues
Give input into clinical trial development and design
Help review small, “seed” grants that SPOREs can fund
Help spread the word about SPORE clinical trials in a variety of ways
Web Site Address: http://spores.nci.nih.gov
Contact Person: Deborah Collyar, PART Program Director & co-PI
|
|
