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
Directors 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 Internationals
Washington Bureau Chief Patrick Young discussed the DCLGs role
within NCI with Eleanor Nealon, director of NCIs 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. Its 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 Directors Consumer Liaison Group Members
Ms. Paula Bowen
Ms. Susan Lowell Butler
Dr. Manuel Castillo
Ms. Kerry Dewey
Ms. Venus Ginés
Dr. Felicia Schanche Hodge,
Mr. Michael Katz
Ms. Susan Leigh
Ms. Ruth Lin
Ms. Gena Love
Ms. Susan McCarthy
Mr. Daniel Moore
Ms. Lillouise Rogers,
Ms. Susan Stewart,
Mr. Brad Zebrack
ONI: Why is the DCLG made up of representatives of organized
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 groups 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 NCIs 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 NCIs 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