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The NCI funded Cancer Cooperative Groups have incorporated patient advocates into many of the groups to review protocols and discuss concepts.
The following groups involve advocates:
· American College of Radiology Imaging Network (ACRIN)
· Cancer and Leukemia Group B (CALGB)
· Eastern Cooperative Oncology Group (ECOG)
· North Central Cancer Treatment Group (NCCTG)
ACRIN
What is the American College of Radiology Imaging Network (ACRIN) Patient Advisory Committee?
The ACRIN Patient Advocacy (PA) Committee has been created to foster interaction between the imaging clinical research community and cancer patient advocates.
ACRIN's overarching goal, through clinical trials of diagnostic imaging and image-guided therapeutic technologies, is to generate information that will lengthen and
improve the quality of the lives of patients. Patient Advocates provide an invaluable perspective to the development and conduct of clinical trials as performed by
ACRIN investigators.
What are the goals of the Patient Advisory Committee?
Participating with the Disease Site Committees to generate ideas for trials
Working with Protocol Teams to develop and implement trials
Promoting awareness and support of ACRIN activities to constituent advocacy groups, NCI and the public at large
Promoting subject accrual into ACRIN trials
Providing input for all trial concept design proposals
Providing written reviews of all proposed protocols, including Informed Consents
Providing input for all patient-related materials
Who can apply to become a member of the Patient Advisory Committee?
Members of the Patient Advocacy Committee should meet the following selection criteria:
Survivor, family member, or caregiver
Advocacy Experience
· Active membership in a National Advocacy Organization (preferred)
· Demonstrate personal interest/experience in advocacy
Interested in imaging research
· Have experience with imaging or knowledge of imaging research
· Demonstrate specific interest in research
Communication skills
· Ability to communicate effectively both verbally and in writing
Leadership
· Demonstrate evidence of participation in decision-making
Supportive of ACRIN’s Mission
· Interest and goals relate with ACRIN’s mission and philosophy
What activities are Patient Advisory Committee members asked to participate in?
Advocates are expected to participate in conference calls and meetings, to include:
Patient Advocacy Committee meetings
Biannual ACRIN meetings
Protocol team meetings specific to the disease site of interest or as assigned by the Patient Advocacy Committee Chair
Site and Modality Committee meetings as appropriate or as assigned by the Patient Advocacy Committee Chair
Advocates are expected to present the patient point of view:
By participating in protocol development and trial design.
By reviewing informed consent forms and all patient-related materials and brochures.
Advocates are expected to maintain current knowledge of ACRIN and ACRIN activities through use of web site, mailings, ACRIN literature and publications.
Advocates may be asked to represent ACRIN at external meetings or through publications.
Advocates are urged to provide information about ACRIN and their trials to their local patient community and National Organizations.
Web Site Address: http://www.acrin.org
Contact Person: Barbara LeStage, Chair Patient Advocacy Committee
CALGB:
Cancer and Leukemia Group B
Patient Advocacy Sub-Committee of the Committee on Advocacy, Research Communications and Ethics (CARE)
What is the CALGB Patient Advocacy Sub-Committee?
The Cancer and Leukemia Group B (CALGB) established the Patient Advocacy Sub-Committee as part of their Committee on Advocacy, Research Communications
and Ethics (CARE) to integrate participant perspectives and issues into the clinical trial system, and thus increase accrual efficiency.
What are the goals of the Patient Advocacy Sub-Committee?
The goals of the CALGB Patient Advocacy Sub-Committee are to help clinical trial participants by improving:
Clinical trial design
The informed consent process
Communication with principal investigators
Who can apply to become a member of the CALGB Patient Advocacy Sub-Committee?
People who are cancer survivors or are at high risk (e.g. family members, etc.), and who:
Represent a spectrum of cancer survivor experiences (not just their own)
Can attend each CALGB meeting (4 per year for approximately three days each, in different cities)
Are willing to learn about clinical trial concepts and challenges
Will share their perspectives in clinical trial development discussions and with the other patient advocates in CALGB
What activities are CALGB Patient Advocates asked to participate in?
CALGB Patient Advocates participate in:
Providing the patient perspective to the development of concepts and protocols
Reviewing CALGB protocols and informed consent prior to activation
Participating in CALGB educational forums focused on patient accrual and communications
Attending disease and modality committee meetings as full and active members
Web Site Address: http://www.calgb.org
Email address: advocates@calgb.org
Contact Person(s):
Deborah Collyar, Co-chair, Patient Advocacy Sub-Committee
Laura Cleveland, Co-chair, Patient Advocacy Sub-Committee
ECOG
What is the Eastern Cooperative Oncology Group Patient Representative Committee?
The Eastern Cooperative Oncology Group (ECOG) established the Patient Representative Committee to provide the patient’s perspective on all aspects of ECOG's research efforts.
What are the goals of the Patient Representative Committee?
The goals of the Patient Representative Committee are:
1. To integrate the patient perspective into the design and execution of ECOG concepts and clinical trials
2. To serve as an educational resource by developing patient communication tools and educational materials for participants that may
facilitate increased participation in ECOG trials
3. To fully incorporate patient representatives into the ECOG committee structure
Who can apply to become a member of the Patient Representative Committee?
People who are cancer survivors and who:
Can represent the viewpoint of other cancer survivors
Can make a time commitment to participate in ECOG Fall and Spring meetings lasting approximately three days and usually requiring travel to the meeting city
Want to learn more about cancer research and support the research efforts of ECOG
Can act as a liaison bringing the community perspective to ECOG and information about ECOG activities to the community
What activities are Patient Representatives asked to participate in?
Patient Representative Activities include:
Providing the patient perspective to the development of concepts and protocols
Developing educational materials and communication tools for participants in ECOG trials
Attending disease and modality committee meetings as full and active members
Web Site Address: http://www.ecog.org
Contact Person(s):
Mike Katz, Co-chair Patient Representative Committee
Mary Lou Smith, Co-chair Patient Representative Committee
NCCTG
What is the North Central Cancer Treatment Group Patient Advocacy Committee?
The North Central Cancer Treatment Group (NCCTG) established the Patient Advocacy Committee to provide the patient’s perspective on NCCTG research Involving Patients within Clinical Trials.
What are the goals of the Patient Advocacy Committee?
The goals of the Patient Advocacy Committee are:
1. To integrate the patient perspective into the design and execution of NCCTG concepts and clinical trials
2. To establish and maintain an infrastructure that facilitates recruiting, education, and mentoring of Patient Advocates throughout
NCCTG Local Cancer Treatment Facilities that offer Clinical Trials. Local Site Advocates gain the tools necessary to educate patients and the
general population on cancer research within their communities.
3. To fully incorporate patient advocates into the NCCTG committee structure including the early protocol review process.
Who are the members of the Patient Representative Committee?
People who are cancer survivors and who:
Represent the viewpoint of other cancer survivors
Make a time commitment to participate in NCCTG Fall and Spring meetings lasting approximately three days and usually requiring travel to Rochester, MN.
Make a time commitment of about two days to attend the annual June Patient Advocate Symposium.
Attend disease and modality committee meetings as full and active members
Want to learn more about cancer research and support the research efforts of NCCTG.
Can act as a liaison bringing the community perspective to NCCTG and information about NCCTG activities to the community.
Can mentor Local Community Advocates in their quest for cancer research knowledge and “training” skills..
What activities are Patient Advocates asked to participate in?
Patient Advocate Activities include:
Providing the patient perspective to the development of concepts and protocols.
Developing educational materials and communication tools for participants in NCCTG trials
Attending disease and modality committee meetings as full and active members
Participating in the annual June Patient Advocacy Symposium.
Participating in three hour quarterly conference calls amongst all advocates and medical liaison people.
Participating in a listserv to further new ideas, research advances, and any other networking needs.
Stepping up to special assignments as new needs come about.
Web Site Address: http://ncctg.mayo.edu
Contact Person(s):
Wayland Eppard, Co-chair Patient Advocacy Committee
Cynthia Chauhan, Co-chair Patient Advocacy Committee
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