NIH/Dr. Francis Collins' Town Meeting

• By joyceg98
• Posted September 11, 2009 at 3:19 pm
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Amy, thank you so much for attending and representing us!

All best wishes,
Joyce

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• By AmyB753
• Posted September 14, 2009 at 9:20 am
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This is a summary of the meeting given by Dr. Collins - in terms of what I saw as important, for anyone who might be interested.

I took many notes on the talk but will try to summarize and hit the key points.

Dr. Collins held this first ever Town Meeting with Constituent Organizations to explain the current mission of NIH, what he sees as its future, and to ask for the help and input of the organizations invited to attend.
This would be the key point - improved communication between NIH and its constituents.

He sees this as at time when NIH has increased funding and support for research and wants to maximize the opportunities under the current circumstances. He is personally excited about the search for fundamental knowledge and its application - the inquiry into the phenomenon of life. He wants NIH to increase support for investigator-initiated research.

Another much repeated topic was his plan to increase comparative effectiveness research with regard to treatments and the plan to archive all of this and make it readily available to everyone.

Briefly he broke his talk down into 5 central themes or in his words "opportunities" in front of NIH.

1. Increased application of genomics and other the new and emerging technology to understand fundamental biology and cause of disease (in everything from cancer to autism).

2. To take the basic discoveries about disease and translate this basic research into better treatment.
He mentioned stem cell research and gene therapy as examples. He sees the importance of increased cooperation between NIH, other researchers and the private sector. The private sector cannot and will not succeed alone in this.

3. At this time it is important to put science to work for the benefit of health care reform. Again he mentioned the need for comparative effectiveness research. He also believes more value should be placed on health care research economics.

4. A greater focus needs to be placed on global health. Again this will require the private sector partnering with NIH in economic terms.

5. Reinvigorating, empowering and supporting the biomedical research community with increased funding and a high value placed on creativity. The NIH Roadmap for Medical Research and the ARRA Goals for NIH include the stimulation of the economy, the creation and preservation of jobs and the advancement of biomedical research. The research performed at NIH is a significant economic stimulator - the investment is very clearly seen to pay off (every $1.00 spent creates $2.00 in economic stimulation).

Other information that I personally found worth noting and that was largely new to me:

There are 27 Centers within NIH and he said that the Congress has frozen it to that number, for the time being. The Clinical Care Center is just one of these 27. Unfortunately there was little or no discussion made of this center. Dr. Collins did however agree that there is a need to address the areas that reach across the portfolio - fill in the gaps that exist between these 27 Centers. (I think this is of great importance to VHL patients since our medical needs cross into so many areas clinically and in terms of research).

Dr. Collins wants to improve the channels of communication between NIH and its constitutents and is making changes quickly. He wants to propagate a voice in support of the importance of medical research and welcomes "stories of impact" that will further this cause.

He provided us with this email address:
NIH-Listens@NIH.gov

He would like us to use that email address to give him and his Center Directors a brief summary of the issues we see as important. I believe this is something VHL patients, physicians and the VHLFA could use and benefit from. Dr. Collins has begun to implement changes in their website to make it more user supportive, friendly and to see that the NIH community is much more inclusive of the general public. (We are, after all, its constituents).

One link that he mentioned that I wanted to share, as it was new to me and it appears very useful:

http://report.nih.gov/ (Research Portfolio Online Reporting Tool - a new system that shows what NIH is actively supporting at any time)


I am excited about the prospect of being interviewed by Dr. Schuler as he creates the new website - and hope I can do that to the benefit of VHLFA.

Amy

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