You may recall my letter to the NCI of December 5th. It is posted here. Below you will find the response that I received today.
I apologize for the delay. This was quite a lot of information to gather. However, thank you for all of the great questions. I really appreciate that you’re trying to understand NCI and its processes. I know there is a large amount of information out there. I will do my best to help guide you through it.
One of the best places to see the complete funding process at the level of detail you describe below is at Everything You Wanted To Know About the NCI Grants Process, beginning on page 43 of the PDF file (Chapter 2 or page 27 in the hard copy). The topic is very technical, and this reference book provides the correct sequence of events and terminology.
The diagram on page 53 of the PDF file above describes NCI’s grant process. The “NCI SRG” is where patient advocates are involved. The National Cancer Advisory Board (NCAB) performs the second level of review after the SRG. There are always public members on NCAB. NCAB members are presidentially appointed for 6-year terms.
Page 64 describes the evaluation criteria used for grants by the SRG. For more details you may be interested in the implementation of the Inclusion of Children in Research Policy.
Continuing on pages 71-72 of the PDF file, the section titled “NCI Funding Determinations” is probably of most interest to you. Program Directors are required to follow the rank order of applications that results from the peer review process. This process is described in more detail on page 72.
A more concise overview of how the NCI budget is developed and executed can be found at http://www.cancer.gov/aboutnci/servingpeople/BudgetProcess.
Advocacy groups are involved in this process many ways, throughout each fiscal year. Many advocacy organizations have formal liaisons to the NCAB. The NCI Director and other NCI leadership meet with advocacy organizations to discuss issues of mutual concern. Patient advocates have participated in at least 742 NCI activities since 2001.
The Office of Advocacy Relations is the primary point of contact for advocacy organizations at NCI. We work with any individual (such as yourself) or organization (such as CureSearch). We do not maintain a public list of these organizations, however, many national organizations that provide support to cancer patients and their families have applied to be listed on our website at https://cissecure.nci.nih.gov/factsheet/FactsheetSearchResult.aspx?.... Full contact information is listed for each advocacy organization.
Executive Committee members are listed in the NCI Fact Book on page 24. Links to all NCI Divisions, Offices, and Centers for Program Directors are found on NCI’s main website. You can find contact information for any federal employee at NIH through the NIH Employee Directory.
NCI does maintain a public database of funded grants. Many fields are included in the database, including the grant abstract (research topic). Grants that are not funded are confidential, and the property of the Principal Investigator who submitted the application. The Principal Investigator may want to revise and resubmit the grant application or may want to use that idea in another application. In fact, maintaining confidentiality of the peer review is mandated by law, and most peer review materials are shredded after the meeting.
The NCI Fact Book discusses grants funded in rank order, versus grants funded as exceptions to this rank order, on page 11. In FY07, 17% of grants were funded as exceptions to the established payline. The NCI Fact Book is normally published in the spring of each year. I recommend it as a source of information to answer a lot of your questions.
Grant awards are not required to be published for a 30-day public comment period.
NCAB meetings are open to the public, except when they are closed to discuss proprietary issues. Grant applications are proprietary information and confidential until they are funded. Notice of all NCI advisory board meetings is provided to the public through the Federal Register and on publicly available websites.
NCI’s funding policy for FY08 Research Project Grants is publicly available at http://deainfo.nci.nih.gov/grantspolicies/FinalFundLtr.htm.
Here is a link to a peer-reviewed article that addresses some of the challenges and issues related to research funding and its relationship to disease statistics: http://content.nejm.org/cgi/content/full/340/24/1881.
Hope you find this helpful. We look forward to working with you in the future.