Consumer Advocates Win a Voice in NCI Programs

BETHESDA, Md--As part of his sweeping reorganization and innovative effort at the National Cancer Institute, director Richard D. Klausner, MD, last November named 15 advocates to the Director’s Consumer Liaison Group (DCLG). Its recommendations will go directly to the NCI director, as it becomes a high-powered chartered advisory committee. Dr. Klausner envisioned a threefold purpose for this group of advocates. First, it will provide a forum for advocates to raise and discuss issues of concern regarding the development of NCI programs and research priorities. Second, it will help NCI develop criteria for selecting consumer advocates to serve on a number of NCI program and policy committees, including peer review panels. Third, it will serve as a strong link between NCI and cancer advocacy groups. Oncology News International’s Washington Bureau Chief Patrick Young discussed the DCLG’s role within NCI with Eleanor Nealon, director of NCI’s Office of Liaison Activities, which coordinates the group.

ONI: Why, after all these years, did NCI decide it needed a consumer advisory group?

Ms. Nealon: It was very innovative on the part of NCI, and it is the first all-consumer advisory body within the National Institutes of Health. There are many reasons for it. It’s not that NCI has not been working with advocates in the past, because they have, and on many different levels. The real driving force for this particular group is Dr. Klausner. He has an extraordinary vision. He really sees all the communities that NCI serves as deserving of having a voice here.

ONI: How were members selected, and what type of advice will this group be giving NCI?

Ms. Nealon: The DCLG consists of 15 people who have been involved in cancer advocacy (see table). They come from diverse communities and were selected from a national nomination process. They are coming together to serve as a forum for the exchange of viewpoints with the NCI scientific community. We are also expanding consumer representation within NCI, even on peer review panels. We just had our biggest group of consumers on a panel, 11 out of 44, to review grant proposals for funding research on long-term cancer survivorship.

NCI Director’s Consumer Liaison Group Members

Ms. Paula Bowen
National Kidney Cancer Association

Ms. Susan Lowell Butler
Ovarian Cancer National Alliance

Dr. Manuel Castillo
Samaritan North Cancer Care Center

Ms. Kerry Dewey
Breast Cancer Resource Network

Ms. Venus Ginés
American Cancer Society-Atlanta Division

Dr. Felicia Schanche Hodge,
Center for American Indian Research and Education

Mr. Michael Katz
International Myeloma Foundation

Ms. Susan Leigh
National Coalition for Cancer Survivorship

Ms. Ruth Lin
Morristown Memorial Hospital

Ms. Gena Love
People Living Through Cancer, Inc.

Ms. Susan McCarthy
Alliance for Lung Cancer Advocacy, Support and Education

Mr. Daniel Moore
US-TOO Prostate Cancer Support Group

Ms. Lillouise Rogers,
Y-ME National Breast Cancer Information and Support

Ms. Susan Stewart,
BMT Newsletter

Mr. Brad Zebrack
National Coalition for Cancer Survivorship

ONI: Why is the DCLG made up of representatives of organized advocacy groups?

Ms. Nealon: We had a very intense and thoughtful planning process to put this whole group together and to develop its blueprint. We at NCI worked with the advocacy community to develop the eligibility requirements and the criteria for the DCLG.

It was decided that DCLG members had to be involved in the cancer experience. That means as cancer survivors, family members, or professionals/volunteers who also serve in an advocacy capacity. The second requirement was that each member would have to represent a constituency and report back to that group. The criteria included cancer advocacy experience, the ability to communicate effectively and to think "globally," and leadership ability.

ONI: The group has met twice now. What are the priorities or areas that its members are focusing on at this moment?

Ms. Nealon: What they have really taken hold of is how to help the Institute wrestle with the public-patient issues that are cross-cutting into cancer research involving human subjects, namely, issues such as informed consent and patient confidentiality.

ONI: Has the liaison group had any input into the plan that Dr. Klausner announced in May that NCI will try to "market" clinical trials to educate people about the value of trials?

Ms. Nealon: That is in the very early stages, but I hope the DCLG will have a role in that. We are certainly working closely with the NCI Office of Clinical Trials Promotion.

ONI: Is there a danger that advocates of a specific cancer, or several cancers, say breast and/or prostate, will influence and dominate the liaison group’s recommendations?

Ms. Nealon: I think that is not a concern. This group was carefully screened and scored on its ability to think globally and to contribute to an effective group process. Its members have talked actively about that problem and said they do not want this group ever to be divided but rather to be a model for working together.

ONI: Advocacy groups sometimes seem to be at odds with oncologists, and oncologists have been resistant at times to patient involvement. How is this playing out in the liaison group, and how will it influence advice to NCI?

Ms. Nealon: The NCI’s track record of working with advocates is truly very different. We have involved advocates in a number of things, such as our SPORE programs (Specialized Programs of Research Excellence), which have been set up around the country. The integration of consumer advocates working with scientists in these programs has been fantastic.

Several cooperative groups of researchers around the country have now incorporated advocates onto their various committees, and this has worked superbly. The Breast Cancer Prevention Trial even set up its own committee of advocate participants to help advise it, and that also worked very well.

There are many examples within NCI of partnerships that are working beautifully for the benefit of both parties. I think most advocates see that and want that. They have valuable contributions to make.

Of course, you can always find someone who is going to have conflict with someone else. But for the most part, I think we have a very productive relationship between oncologists and advocates. I would say that the DCLG creates a new kind of junction between the scientific community and the advocacy community, and I think it will be enriching to everyone concerned.

ONI: Is there any direct contact between any of the professional oncology groups and the DCLG?

Ms. Nealon: Several members of the DCLG are from professional oncology groups. I think there are increasing links between the advocacy community and professional groups.

ONI: Have you found resistance within NCI to having such a group, particularly when you start urging the idea of advocates participating in peer review?

Ms. Nealon: Basically, no. Dr. Klausner is a very positive individual with a lot of influence. Besides, many people have already tested the water by working with advocates, for example, the National Cancer Advisory Board and NCI’s Board of Scientific Advisors. Some scientists who told me that this interaction would never work have come back to me and said, "I was wrong. It really can work very well."