I was fortunate enough to be on a conference call with an NCI Director of Advocacy Relations yesterday. My primary goal was to determine the best method for PAC2 to advocate for increased funding for childhood cancer. Secondly, to determine "how the system works", in other words; the who's, what's and how's of how NCI allocates funding for specific cancer research areas. Ah if it were only that simple.....
The call was approximately an hour long, and I believe the NCI attempted to be helpful. However, I still am unconvinced of the information I got, and have sent a follow up letter, posted below. Essentially, in response to my allocation process question, the NCI claimed that grants are awarded based on being the "best science". Period. REGARDLESS of cancer type, mortality for that cancer type, incidence of that cancer type, person-life-years-lost for that cancer type. They also are unable to adjust awards or account for the fact that there may be a high level of research ongoing on similar cancer types outside of the NCI grant process. I asked that question a few different ways and got the same answer.
As far as advocacy, I do have some info there and will work that relationship for us and pass on. All in all, an interesting and frustrating call. But one we will not let lie....(did I say lie as in rest or...?). Here is the follow up letter I sent earlier today.
thank you so much for your time and patience today. I wanted to ensure that my understanding of the funding process is consistent with what you described. I also have a couple additional follow up questions.
Grant Funding Process Description
1. Initial Grant Selection
a. Internal NCI Grant Review Teams review all grant applications
b. The selection criterion is "good science"
c. Criteria such as type of cancer, incidence, mortality/5 or 10 year survival rates, or person-lost-life-years are not considered
d. NCI is unable to quantitatively or qualitatively account for funding to research into similar projects or cancer types outside NCI
2. Program Director Review
a. Completed by a Program Director
b. Goal is to identify research "gaps" and eliminate redundancy
c. Identified gaps are then reviewed in a workshop, then to an Executive Committee who makes recommendations to an External Board
d. Approved gaps are filled with additional funding
3. Peer Review Boards/Advocacy Groups
a. The primary means for the public to advocate is to assist existing Peer Review Boards/Advocacy Groups
b. Additional or alternative advocacy efforts for the general public exist, but may require expertise
1. At what stage(s) in the funding process do the Advocacy groups become involved? Can you briefly describe the Advocacy efforts?
2. Can you provide a complete list of all the Advocacy Groups and contact information?
3. Can you provide further information on the Grant Reviewers, Program Directors and Executive Committee members (i.e. - names, resumes, past and current affiliations)
4. Is there a database showing approved/rejected grants and research topics?
5. What percentage of funds are distributed in the initial grants vs. grants to fill gaps?
6. Are grant awards required to be published in the Federal Register for a 30-day public comment period?
7. Are public meetings held to discuss the grant awards?
8. Is there a written policy or guidance document that describes the NCI funding process?
9. Is there a written policy or guidance document that describes a "gap" as was discussed today?
10. Can you provide a reference for your general statement "research dollars do not directly correlate to increased survivorship"?
11. Should any questions require a FOIA, please provide as much detailed information as possible to assist in the request.
Thanks again for your time, and I look forward to your response.
I had other things I wanted to say, but the brains
of this operation came to the rescue, and convinced me to start the dialogue and build up to the tougher questions. This is a portion of what I withheld. Discussion
Again, forgive my ignorance, and I recognize that you provided a “watered down” version, but I am still struggling with the simple explanation. It would seem that; 1. There is no basis of design for the grant selection program.
2. The basis of design can only be completed after an evaluation of the problem during a problem formulation stage.
3. The problem formulation stage would evaluate real world data such as mortality rates, incidence, level of existing research, person-years-life-lost, etc.
4. Once the problem is defined, an NCI-wide strategy for selection of grants would be developed, focusing on the prioritized problems. (Recognizing that potentially some problem areas may “come up short” due to lack of quality grant applications.)
5. Then, and only then, is there a scientific basis to address the prioritized problems, allocate funding to address the problems and begin the review of grants and select the “best science” to address the prioritized problems.
6. A final step would involve a monitoring program to determine the success/failure of the funds allocated in addressing the problems.
7. Without this basis of design, problem formulation and, ultimately, the development of metrics to measure success, how can the NCI, through an essentially “random” funding process based on “best science” only, possibly hope to achieve its goal of a “Nation free from the suffering and death due to cancer”?
I specifically asked and you specifically claimed that real world data (e.g. cancer type, mortality, incidence, etc) is NOT a criteria in the Funding Process. My question is how can the data which defines the problem NOT be used or considered irrelevant?
But perhaps I asked the wrong question. Perhaps when you say the data is not used in the funding process, the grants being reviewed are already focused on addressing a particular “problem” as already identified by NCI. In that scenario, if grants being reviewed were focused on being the “best science” to address a particular “problem”, I can see how the “data” would not need to be considered in the grant review process. Perhaps I should ask how the “problem categories” are selected and funded? Or perhaps I just misunderstood your explanation.
If none of these apply, surely you see the reason for my incredulity?
I know, I know, we are not even close to yelling for more childhood cancer funding. Still at the bottom of the mountain. But we have to understand the process, and, unfortunately, work within the process. As soon as it makes sense to flood someone with letters, or advocate, you will know..... PAC2 comments, thoughts, suggestions are welcome.......