Office of Cancer Communications

Building 31,Room 10A24

Bethesda, MD 20892

November 1997

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health

Envisioning the DCLG

Background
There has been an appreciation for the contribution that consumer advocates make to the work of the National Cancer Institute. Their role in decision-making at the Institute has grown in recent years as cancer advocacy groups have become better organized and more proactive on behalf of their interests and concerns and as NCI's mechanisms for obtaining and utilizing their input have been expanding. For example, the Office of Liaison Activities (OLA) was recently established as a central point of contact and NCI link to cancer advocacy organizations, strengthening NCI's relationships and cooperation with these groups. At the request of NCI Director Richard Klausner, M.D., a key initiative of this Office has been the development of the Director's Consumer Liaison Group (DCLG). As envisioned, this group will help develop programs and set research priorities as well as find ways to increase consumer representation at NCI and provide a forum for exchange of views between the cancer advocacy and scientific communities.

Consumer representatives of advocacy organizations participate regularly in a variety of NCI committees, including the National Cancer Advisory Board (NCAB) as well as many special purpose committees or groups formed by various units within the Institute. Until recently, however, the pool of consumer advocates known to NCI and serving on those committees has been relatively small. With the establishment of OLA, this pool began to expand, and the nomination process for the DCLG has resulted in the identification of a larger number of additional, appropriate consumer advocates who have indicated their willingness to be called upon for service in a variety of activities at the NCI. The DCLG will be asked to help develop further mechanisms to identify additional consumers who can be invited to represent at NCI the voice of the many and diverse individuals whose lives are affected by cancer.

Purpose and Operations of the DCLG

The DCLG is composed of 15 consumer advocates selected by the NCI Director from nominations received from the cancer advocacy community. Members will serve 3-year terms.

Ongoing communication and collaboration between NCI and the consumer advocacy community is a dynamic process, and the role of the DCLG is expected to evolve over time. The three-fold purpose of the DCLG is to:

• Help develop and establish processes, mechanisms, and criteria for identifying appropriate consumer advocates to serve on a variety of program and policy advisory committees responsible for advancing the mission of the NCI
• Serve as a primary forum for discussing issues and concerns and exchanging viewpoints that are important to the broad development of NCI programmatic and research priorities
• Establish and maintain strong collaborations between NCI and the cancer advocacy community to reach common goals

It will be incumbent upon the DCLG both to help set its agenda and to develop strategies for accomplishing its work. These strategies are expected to include two or three meetings yearly, supplemented as necessary by the more intensive efforts of subgroups charged with specific tasks and by communication via mailings, teleconferences, or website. Initial tasks projected for the DCLG include:

• Reviewing the process used in identifying initial DCLG members to provide input regarding the selection process for future DCLG members
• Developing mechanisms and criteria, in partnership with NCI, for use in identifying appropriate consumer advocates to participate in a variety of NCI program and policy advisory committees
• Serving as a link between NCI and consumer advocacy organizations

In addition to collaborating with NCI on a variety of projects, the DCLG will provide valuable perspective and viewpoints on current NCI programs and challenging issues, and will help NCI in planning programs and setting research priorities. In all these efforts the members of the DCLG will be seeking and reflecting input from their constituencies and relaying information back and forth between those constituencies and NCI. Findings and recommendations of the DCLG will go directly to the Advisory Committee to the Director (ACD) of NCI1. The NCI Office of Liaison Activities will coordinate and support the DCLG. Eleanor Nealon, OLA's Director, will serve as the DCLG's Executive Secretary.

Initial Steps in Developing the DCLG
The NCI Director, Dr. Richard Klausner, recognized the need for and value of expanded consumer advocate participation in NCI program and policy development and, in the fall of 1996, directed the OLA to work to establish the DCLG as a mechanism for accomplishing this. Informal discussions conducted by the Director of OLA with representatives of key advocacy groups confirmed initial support for the DCLG. OLA held internal planning meetings with a group of key NCI staff from various divisions and they agreed on the need to form a Planning Group that would itself represent the consumer advocacy community as well as NCI. The Planning Group would help define the initial role of the DCLG, criteria for individual members, and the characteristics of the group as a whole, and would design a process for identifying and evaluating potential members. NCI staff guided the development of the Planning Group and agreed that the majority of its members should be consumer advocates. Consumer advocates were defined as:

survivors of cancer or anyone who has been affected by the suffering and consequences or risk of cancer.

This definition was broad; it encompassed families and friends of cancer patients, health care providers, and community workers dealing with cancer issues, as well as those who had been diagnosed with cancer. Health professionals were included in recognition of the fact that many of them actively support the cancer advocacy community and play advocacy roles.

Criteria for membership on the DCLG Planning Group were established for both NCI and consumer advocate members.

NCI members of the DCLG Planning Group were required to:

• Represent broad programmatic knowledge of NCI's research mission and activities
• Have broad knowledge of or experience with the issues and concerns of the cancer advocacy community

Consumer advocate members of the DCLG Planning Group were required to:

• Be knowledgeable about the research mission of the NCI (and preferably have some experience in dealing with NCI procedures)
• Be effective planners, able to think "globally" rather than focusing on a specific cause-related issue
• Have a balanced perspective (as perceived by the NCI and the advocacy community)
• Represent, as a group, a range of cancer sites
• Be demographically and culturally diverse, as a whole
• Represent or be involved with a cancer-related advocacy or voluntary organization (such organizations must: 1] be national in scope or otherwise broadly based, with an identified (authorized) representative; 2] share common goals with the NCI mission and programs; 3] be nonprofit (or for-profit educational); and 4] support a rigorous scientific process and method in investigation of new approaches to cancer prevention, detection/diagnosis, and treatment)
• Not currently serve on any NCI-chartered board or committee

The NCI staff also recommended that, in order to avoid real or perceived conflict of interest, members of the Planning Group should not be eligible for membership on the initial DCLG, although other members of their respective organizations would be eligible to serve.

Using these criteria, and working from a list of potential Planning Group members compiled with wide NCI input, 10 consumer advocates were identified and selected by the NCI Director. These 10 consumer advocates, along with the 7 NCI staff already participating in DCLG planning efforts, comprised the DCLG Planning Group. Their names and affiliations are shown below.

Members of the DCLG Planning Group

Kathryn Adams, Vice President
Cure for Lymphoma Foundation

Diane Blum, M.S.W., Executive Director
Cancer Care, Inc.

Elibeth Clark, Ph.D., President
National Coalition for Cancer Survivorship

Sharon Green, M.H.A., Executive Director
Y-Me National Breast Cancer Organization

Elmer Huerta, M.D., M.P.A., Member
Intercultural Cancer Council

Karen Eubanks Jackson, Founder and National President
Sisters Network, Inc.

Peggy McCarthy, M.B.A., Executive Director
Alliance for Lung Cancer Advocacy, Support and Education

Jane Reese-Coulbourne, M.S., Ch.E., M.B.A., Executive Director
National Breast Cancer Coalition

Susan L. Weiner, Ph.D., Chair
North American Brain Tumor Coalition

COL (Ret) Jame E. Williams, Jr., M.S., S.P.H.R., Board of Directors
US-TOO International, Inc.

National Cancer Institute

Leslie Ford, M.D., Division of Cancer Prevention and Control

Ruthann Giusti, M.D., Division of Cancer Epidemiology and Genetics

Brian Kimes, Ph.D., Division of Cancer Treatment, Diagnosis and Centers

Mary McCabe, R.N., Division of Cancer Treatment, Diagnosis and Centers

Eleanor Nealon, Office of Liaison Activities, Chair, Planning Group

Susan Sieber, Ph.D., Division of Cancer Epidemiology and Genetics

Chris Thomson, Office of Cancer Communications

¹ The advisory Committee to the Director consists of the Director, NCI, as Chair; the Chair of the National Cancer Advisory Board; and the Chairs of the NCI Board of Scientific Counselors and Board of Scientific Advisors. The three nonvoting ex-efficio members are the Deputy Director, NCI; Director, Division of Extramural Activities, NCI; and the Associate Director for Science Policy, NCI.

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