PCORI

Dear Research Advocate, Our guest author this week is Ellie Dehoney, Research!America’s Vice President of Policy and Advocacy. Some long-awaited, promising news regarding the budget caps: congressional leaders and the White House have agreed in principle on a deal that would raise the discretionary budget caps for Fiscal Years 2020 and 2021 and raise the debt limit sufficiently to avoid another “cliff” for at least two years. There are (as there always seem to be) caveats: the amount by which the caps would increase is not yet public, negotiations continue on such variables as offsets, and we don’t yet know how the deal will fare with other than those members of Congress in leadership roles...
Dear Research Advocate, For the remainder of the summer, we will have a series of guest authors writing Mary’s Weekly Letter. This week’s author is Mike Coburn, Research!America’s Executive Vice President and Chief Operating Officer. Members of Congress are back in town following the Fourth of July holiday, and talks are taking place between Congressional leaders and the Administration to resolve the issue of the budget. Complicating matters is the need for Congress to pass and the Administration to approve an increase in the debt limit. Research!America sent a letter to Congressional leaders and the White House urging swift action. While news reports indicate the Administration is...
Dear Research Advocate, “Not only is it important to ask questions and find the answers, as a scientist I felt obligated to communicate with the world what we were learning.” Stephen Hawking This apt quotation serves as the preface to a newly released survey from ScienceCounts and the Alan Alda Foundation for Communicating Science. Their findings, coupled with those reported a few weeks ago by SigmaXi and Research!America, signal recognition that if science is to thrive, scientists themselves must help make the case. Both surveys indicate that scientists are very willing to become engaged -- more so than ever before, in my experience! This week, members of Congress are back home, but not...
The summer 2019 edition of the Research!America newsletter , The Research Advocate, is now online. In this newsletter, you'll find information about the recent Wellcome Global Monitor report on global attitudes about science, Research!America's recent briefing on patient-centered research on rural heart health, the measles outbreak, and much more.
Dear Research Advocate, “June Gloom” is what the residents of Los Angeles call this past month’s weather. I was in California last week at the invitation of UC Riverside, which has, in addition to a robust portfolio of federally funded research, an inspiring commitment to the community. For the record, it wasn’t gloomy in Riverside, but then, the LA area is vast, and the overcast is closer to the ocean. There is a decent parallel here to the vastness of the landscape for support of research in Washington: the House passed two “minibus” appropriations packages this month that include significant increases for federal agencies that support research. This week we issued a statement about the...
Dear Research Advocate, Later today, I will participate on a panel at Aspen Ideas: Health to explore the implications of an ambitious new survey commissioned by the Wellcome Trust. The report , which was released yesterday in Washington, explores public attitudes on trust in science, gathered in a survey conducted in 140 countries. Overall, trust in science is linked strongly to education and income and also tracks with trust in governments and the military. The survey takes a deep dive on attitudes toward vaccines, with findings that appear to closely track our U.S. findings from last year. The findings in the report will help us better understand how individuals, both in the U.S. and...
Dear Research Advocate: The Senate approved a four-bill minibus package including appropriations under the jurisdiction of the Interior-Environment, Financial Services, Agriculture (which includes FDA) and Transportation-HUD Subcommittees yesterday, and will now likely take up a combined Labor-H/Defense appropriations bill (inclusive of NIH, CDC, AHRQ, the Department of Defense CDMRP and other important research funding). Research!America sent a letter to Appropriations leaders today reinforcing their commendable efforts to wrap up FY19 appropriations before the 9/30 deadline. The stakes here are high: the alternative scenarios -- either flat funding under a continuing resolution or a...
Research and development involves collaboration, investments and risk to ensure new treatments benefit patients, according to panelists at a Capitol Hill briefing on February 14 hosted by Research!America and the Congressional R&D Caucus. The briefing “Medical Innovation 101” highlighted various aspects of the research continuum from basic to post-market research. Eleanor Perfetto, Ph.D., MS, of the National Health Council moderated the discussion, which included panelists representing different areas of the medical research continuum: basic science, clinical and translational research, health services research and health economics and the patient community. Keith Yamamoto, Ph.D., Vice...
Dear Research Advocate, Washington is back in full swing. Members of Congress were sworn in on January 3 and started working right away on a budget resolution to facilitate repeal of the Affordable Care Act (ACA). While repeal appears inevitable, it’s a fact that the public and policymakers continue to be of two --or more! - minds about what a replacement should look like. The crucial importance of continuity extends beyond insurance coverage to include the Prevention and Public Health Fund (PPHF), the Patient Centered Outcomes Research Institute (PCORI) ,and the Center for Medicare and Medicaid Innovation (CMMI). I don’t want to overwhelm you with advocacy asks: please use this advocacy...
“Delivery” has been in the spotlight this week as part of our #CuresNOW advocacy month. The delivery aspect of the discovery-development-delivery research pipeline is broad territory, from the research that informs improvements in our health care delivery system; to connecting patients to the right treatments at the right time, the first time; to creating a platform for new discovery and development to keep the cycle in motion, and the patient foremost in mind. Delivery week has included a blog post with testimonials about living with hydrocephalus, a new fact sheet on chronic kidney disease (CKD) and lots of action on social media -- including Research!America staffers sharing selfies...

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Sidebar Quote

The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient