National Center for Health Research, September 12, 2019
RE: Reauthorize the Patient-Centered Outcomes Research Institute (PCORI)
The National Center for Health Research (NCHR) is a non-profit think tank that conducts, analyzes, and scrutinizes research, policies and programs on a range of issues related to health and safety. We do not accept funding from pharmaceutical or medical devices companies, so that we can be an objective voice on prevention and treatment strategies.
As Congress works to transform and shape the American healthcare system to be more effective, affordable, and patient-centered, we are writing to express our strong support for the reauthorization of the Patient-Centered Outcomes Research Institute (PCORI).
Federal agencies spend billions of dollars each year on medical research and prevention programs, but relatively few of those funds support research that compares the safety or effectiveness of different medical treatments or prevention strategies. Even less is spent to ensure that safety and effectiveness are evaluated in ways that matter to patients. For example, many cancer drugs are effective at shrinking cancer tumors, but fewer cancer drugs help patients live longer and with a better quality of life.
The unique role of PCORI is to support research that will provide information to physicians and patients about improving the quality of medical treatments and disease prevention strategies. This research is essential if we are to improve our healthcare system. Currently, the U.S. spends more on medical care than any other country but we do not live as long as men and women in approximately forty other countries.1
As you know, PCORI was established in 2010 to fund and build the nation’s capacity to conduct comparative clinical effectiveness research (CER). To date, PCORI has invested nearly $2.4 billion in more than 600 patient-centered CER studies and related projects. These studies take years to complete and there is often no financial incentive for industry to conduct them. Other than PCORI, there are limited funding sources available for academic researchers at medical institutions to conduct such research. The research funded by PCORI is improving the U.S. healthcare system by informing the development and use of information and tools that help physicians and patients make life-altering treatment decisions, helping them to determine what therapies are likely to be best for each individual patient. It also helps train healthcare researchers at medical institutions across the country.
For example, we’ve been impressed by recent PCORI-funded research that has determined the best way to help low-income children with asthma, to reduce insomnia among cancer patients, to help prostate cancer patients and breast cancer patients make treatment decisions, and to help ensure that cardiac patients get the rehabilitation services they need to survive and thrive. These are not the kinds of studies that any federal agencies or for-profit corporations support. In fact, the GAO concluded in its March, 2018 report that PCORI is fulfilling its Congressional mandate to generate evidence that patients and those who care for them can utilize to make better-informed health care decisions.
NCHR supports PCORI’s critical, Congressionally-mandated mission to do research differently. For all the advances that result from our impressive federal public health agencies, such traditional research rarely addresses the questions patients face daily about which treatment will work best for them in their particular situations. As a federally funded nonprofit research center, PCORI is uniquely dedicated to funding studies comparing which approaches work best, for whom, and under what circumstances.
Additionally, PCORI has partnered with patients and clinical networks to build an infrastructure to support the nation’s capacity to conduct comparative clinical effectiveness research, called the National Patient-Centered Clinical Research Network (PCORnet), enabling research to be conducted more efficiently and at lower cost.
We speak from experience about the importance of PCORI. Our Research Center has received funding from PCORI that has helped support life-saving research and enabled us to train patient advocates to work with researchers to ensure that more medical studies are focused on the kinds of outcomes that matter most to patients and their families.
If the United States is to regain the stature of offering a top-notch healthcare system that is the model for other countries and make the most of our considerable investment in personalized and precision medicine, PCORI must be sustained.
Please contact me at (202) 223-4000 or firstname.lastname@example.org if you have questions or seek additional information.
Diana Zuckerman, PhD
- Central Intelligence Agency. “Country Comparison: Life Expectancy at Birth.” The World Factbook, 2017, https://www.cia.gov/library/publications/the-world-factbook/rankorder/2102rank.html. 12 Aug 2019.