CLC Comments on Structure and Mission of NCI Translational Research
January 20, 2006
Dear Dr. Hawk:
The undersigned organizations, representing cancer patients, physicians, and researchers, appreciate the opportunity to comment on the mission and responsibilities of the Translational Research Working Group (TRWG). We applaud the National Cancer Institute (NCI) for convening this panel and offer several suggestions related to the TRWG membership and the process for soliciting input regarding the group's work.
Process for Soliciting Written Comments
We commend the leadership of NCI and TRWG for establishing a process for the submission of comments from interested individuals and organizations regarding the panel and its work. However, we recommend that the comment procedures be revised to encourage a more public exchange of advice and opinions. The advantages that might result from keeping all comments confidential - including the possibility that commenters will be more candid than if their comments are published - are greatly outweighed by the benefits of an open and public exchange of views. Moreover, it is unclear by what authority NCI would be able to safeguard the confidentiality of comments submitted to it as a public agency, thus suggesting that potential commenters may be given an unrealistic sense of security regarding their comments.
We suggest that comments
be available to the public, by providing access to hard copies of comments
in a central location and also by ensuring access to electronic copies
on the TRWG website. Stakeholders will be interested in the concerns and
interests of others, and public availability of comments will foster an
open dialogue about the TRWG and its mission.
Members of the patient advocacy community have experienced significant confusion about the procedures that NCI would follow in selecting members of the TRWG. Some understood that there would be a well-defined application process, in which the standards for selection for TRWG membership and a deadline for submission of applications would be published. The appointment of TRWG members absent notice regarding the process for selecting members was a surprise to many advocates.
We recommend below that the membership of the TRWG be expanded to include representatives of several different interests. In addition to specific proposals regarding TRWG membership, we suggest that NCI and TRWG leadership develop and make public the standards that will be employed in choosing those who will participate in the Roundtable meetings. As there was a lack of clarity regarding the naming of TRWG members, there is now uncertainty regarding participation in the Roundtable meetings. Transparency regarding the standards for Roundtable participation is critical to encouraging receptivity in the cancer community to the TRWG recommendations.
Expansion of the TRWG Membership
The TRWG, with current members, is a large group in which productive and creative discussion and debate may be difficult. Despite the size of the panel, however, we recommend that careful consideration be given to the addition of several members in these categories:
" Patient advocates. The inclusion of only three patient representatives on a panel of 60 is inadequate to guarantee that the patient or survivor voice is heard and that the diversity of the patient community is conveyed. More patient advocates should be added to the panel. Supplementing the patient advocate membership of TRWG will ensure that the diverse perspectives of survivors are communicated. In addition to bringing the viewpoint of the ultimate "consumer" of translational research, patient advocates have other experiences and expertise to offer the TRWG. We note in particular that a number of patient-driven organizations are significant funders of translational research and can share the knowledge derived from administering these programs.
of "rare cancers." The TRWG includes some researchers whose
work focuses on cancers of rare incidence, but we suggest that the membership
be expanded to include more researchers with knowledge and experience
related to rare
" Industry representatives. We identify two representatives of the pharmaceutical industry on the TRWG. Because industry is an important partner in the translational research enterprise and because there is significant diversity among industry players, we are skeptical that two representatives from pharmaceutical companies can fully and adequately represent industry. We propose that additional industry members, including those from biotechnology companies, be named to the TRWG to ensure that the industry's translational research views will be more appropriately conveyed.
Because the work of the TRWG is of great importance to the entire community of cancer patients, physicians, and researchers, it is critical that the panel represent the broadest cross-section of the community and include those who can articulate the needs of the medically underserved. In re-evaluating the membership of the TRWG, we urge the TRWG and NCI leadership to assure that the membership reflects the diversity of the cancer community and American society.
Specialized Programs of Research Excellence (SPOREs)
We understand that the charge of the TRWG is broad and includes an evaluation of the entire translational research portfolio. As the group moves forward with its evaluation of the NCI translational research effort, we urge that special attention be paid to the role of the Specialized Programs of Research Excellence (SPOREs) in the translational research process. In particular, we suggest that the SPOREs be carefully considered for features or advantages they possess that may not be replicated in other research funding mechanisms.
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