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| Marc Boutin |
The National Health Council (NHC) is the only organization of its kind that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. Made up of more than 100 national health-related organizations and businesses, its core membership includes approximately 50 of the nation’s leading patient advocacy groups, which control its governance.
Marc Boutin serves as the organization’s executive vice president and chief operating officer. Throughout his career, he has been actively involved in health advocacy, policy, and both federal and state legislation. He has designed and directed advocacy strategies for legislative initiatives, which have included issues ranging from access to healthcare to cancer prevention. Before joining the Council, Boutin served as the vice president of government relations and advocacy at the American Cancer Society for New England. In addition, he was a faculty member at Tufts University Medical School, where he lectured on healthcare policy.
Q: I understand the National Health Council has started a new program that connects promising biomedical research with funding sources. Talk a little about the impetus for your newest endeavor, HealthResearchFunding.org?
A: HealthResearchFunding.Org was conceived several years ago by a group of chief medical officers and research directors from NHC member patient advocacy organizations. They recognized the need to make the best use of the significant expertise and funds spent on the rigorous scoring of research proposals. With the help of the National Institutes of Health (NIH), the NHC set out to develop an innovative solution to make the most out of the nation's investment in biomedical research.
Q: How might someone who is interested participate?
A: Researchers whose proposals have been peer reviewed, deemed meritorious, but unfunded by either the NIH or by an NHC member organization, are invited to register with HealthResearchFunding.org. Once registered, researchers can upload requests for proposals and search for funding sources. There is no charge for use of the site by investigators or their institutions.
By using this online resource, potential research supporters can avoid duplication of effort and more efficiently identify and evaluate peer-reviewed research proposals. On the other hand, researchers gain another opportunity to showcase their worthy proposals and possibly find a funding source.
The database will be expanded later this year to include NHC business and industry members and funding sources outside NHC membership.
Q: Who may search the database?
A: Registered investigators have the ability to search for funding sources through the database, but cannot view or search for proposals from other researchers. Funding sources are able to search for research proposals, individual researchers and information from other funding organizations.
Q: How does HealthResearchFunding.org help researchers?
A: HealthResearchFunding.org helps researchers obtain a broad audience of potential funding sources from the nonprofit sector for their proposed research.
By offering investigators the opportunity to promote their peer-reviewed research proposals through the database, we hope to increase the likelihood of potential funding for worthy health research. By utilizing the database, researchers gain an organized and unvarying environment in which to exhibit their proposals alongside their peers. As the system grows, their respective research institutions could spend less time, effort, and resources looking for financial support and more time conducting research to aid in the development of new treatments for patients.
Q: How does this database help funding sources?
A: HealthResearchFunding.org helps participating funding organizations avoid duplication of effort as they seek to fund research by making use of the significant public investment of intellectual capital, time, and funds in the NIH and NHC member peer review process. When on the database, funding organizations are able to upload requests for proposals and have the ability to post ideas for collaboration with other funding sources.
Q: What is the ultimate goal for this program?
Our goal is to help researchers and funding sources in their development of new treatments and cures for people with chronic conditions.
To do so, we hope to expedite the process by which participating non-government funding organizations underwrite biomedical research by linking them with researchers whose proposals to NIH and NHC member organizations have been deemed meritorious and worthwhile.
To learn more, visit http://www.healthresearchfunding.org/ or write to healthresearchfunding@nhcouncil.org.
CHI-Advancing California biomedical research and innovation
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| Marc Boutin |
The National Health Council brings together all segments of the healthcare community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers.
Boutin has been actively involved in health advocacy, policy, and both federal and state legislation throughout his career. He has designed and directed advocacy strategies for legislative initiatives, which have included issues ranging from access to healthcare to cancer prevention. Before joining the Council, Boutin served as the vice president of government relations and advocacy at the American Cancer Society for New England. In addition, he was a faculty member at Tufts University Medical School, where he lectured on healthcare policy.
At the CHI 2011 Annual Meeting, to be held Nov. 3 in San Francisco, Boutin will discuss the Moddern Cures Solution, a proposal to update the U.S. regulatory system to remove barriers to innovation and provide greater predictability in the search for answers to the nation’s unmet medical needs. It is not too late to register.
Q: Let’s talk about the impetus for the National Health Council. What was the driving need behind its formation?
A: The National Health Council was formed in 1920, so we have a long history. We were formed by a group of about 20 patient organizations that was looking for a trade association.
Q: Were there any other large trade associations of its kind in existence?
A: No, and there currently is nothing out there. We still serve in that function, so half our work is really directed at member services. Our work includes anything from board management, governance, corporate structures, volunteers, income development and benchmarking studies. We still maintain what is called the standards of excellence. The standards are a set of nonprofit standards, essentially, that the patient groups have to meet in order to be in membership. They are actually the most strident nonprofit standards in the industry.
Q: How is your organization funded?
A: We are a dues-based organization so about half our income comes from dues and the other half comes from sponsorships.
Q: Can you give me an example of some of the leading patient advocacy groups that make up your membership?
A: Some of the original founders include American Cancer Society, American Heart, American Diabetes and we run the gamut from those very large groups such as Easter Seals to small groups that represent various disorders like Sjögren’s disease or Alpha-1.
Q: What unique function does your group serve?
A: We are able, through our process, to engage the community, create a common understanding and then a common platform from which to advocate on systemic issues. And when they come together, they tend to have a great deal of impact.
Q: What are some of those messages you are working to convey through this organized effort?
A: In terms of public policy, we really are focused on two different things. One would be access to care, so we’ve been heavily involved with the implementation of health reform in a variety of different initiatives right down to the level of helping craft part of the regulatory language, as well as the legislative language, that created the Affordable Care Act. So, for example, we worked on defining the essential health benefits the Secretary of Health and Human Services is working on. We did our own actuarial analysis of what it would mean to put certain benefits into the design. We did recommendations on regulatory language.
On the other hand, we are extremely interested in development of new treatments, and so there is the dual focus.
Q: Tell me a little about your latest effort, the Moddern Cures Solution, which stands for Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network?
A: We are promoting legislative language that will do two things. It will, one, allow a company to bring a medicine to market without a patent, and that is significant. A lot of people don’t understand, but when somebody identifies a new potential medicine in the early pre-clinical phases, it typically will go to a company that could develop and commercialize that product and bring it to U.S. Food and Drug Administration approval. In 80 percent to 90 percent of those cases, new potential treatments are dismissed not because the science is not good, but because they have weak patents.
It just makes no sense from a patient perspective, and this legislation corrects that. It says if you’ve got good science, you can bring it to market, receive a return on your investment, and still allow a generic to enter at a predetermined time.
Q: Does this proposed change include medical devices?
A: That is the second half of the legislation. There are mechanisms that address specific issues such as creating the incentives to invest in the device/diagnostic arena.
Q: Is this modeled after any other country’s system?
A: No, and actually these initiatives were identified by the chief medical officers of the patient groups. In other words, they came to the council about five years ago and said, “We’ve doubled the investment in the development of new treatments, and we are not getting double the output of new treatments.” And they start to look at the lifecycles of the development of treatments and diagnostics and identify barriers.
And then asked us to look at possible solutions and we settled on these four major issues and developed solutions that we think could work, but are not actually modeled on existing solutions. We are, however, already seeing Europe and other countries look at this as a potential metric that they would copy.
Q: What has the reception been like so far from the policy side?
A: Extremely positive. It has been described by some as one of the few major health policies that has bipartisan support and the current Congress and administration could actually enact. It is exciting.
Q: What kind of dialogue do you hope to get out of the 2011 CHI Annual Meeting?
A: I am hoping, given the audience that will be at that meeting, that there will be a great deal of synergy on what we are doing on the development of new treatments and how it will positively impact the environment that your audience is working and living in.
I figured it is an incredible event, and I was really pleased to be invited to participate.
CHI-Advancing California biomedical research and innovation
