PCORI

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...
Is the patient voice adequately represented in the drug development process? The situation has improved but the patient community is not yet recognized as a co-equal in drug development or regulatory review according to Marc Boutin, executive vice president and chief operating officer at the National Health Council , a panelist at a BIO International Convention session on Wednesday. ’€œWe scare you,’€ declares Boutin who says there is an adversarial connection between patients, regulators and industry but the relationship has evolved over the last decade. Patient advocates have developed strategies to amplify their voice and demand access, providing the data and evidence to help transform...
Dear Research Advocate: Budget Uncertainty Deepens The House Appropriations Committee has postponed this week’€™s scheduled consideration of the Labor-Health and Human Services (Labor-H) funding measure. A New York Times article indicated that the bill protects NIH funding; but, given how low the overall spending number is for Labor-H, “protected” is most likely interpreted as the NIH being cut less than other agencies, themselves highly valued. The distance between the Senate (passed) and House (estimated) Labor-H appropriations ’€” in excess of 20% ’€” sets the stage for another continuing resolution (CR). What actually does happen next is uncertain, which is why advocacy is essential...
Dear Research Advocate: Budget Uncertainty Deepens The House Appropriations Committee has postponed this week’€™s scheduled consideration of the Labor-Health and Human Services (Labor-H) funding measure. A New York Times article indicated that the bill protects NIH funding; but, given how low the overall spending number is for Labor-H, “protected” is most likely interpreted as the NIH being cut less than other agencies, themselves highly valued. The distance between the Senate (passed) and House (estimated) Labor-H appropriations ’€” in excess of 20% ’€” sets the stage for another continuing resolution (CR). What actually does happen next is uncertain, which is why advocacy is essential...

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Funding research gives all of us a better chance of living a healthier life.
Pam Hirata, heart disease survivor